The Sparrow

Republishing this. Received this from my friend Roy whose sister lived with and recently died of Alzheimer's. The message in the video he sent was a poignant one. It is included here with the text. 

The Sparrow

Father: "What is that?"

Son: "A Sparrow"

Father: "What is that?"

Son: "I just told you, It's a a sparrow"

Father: "What is that?"

Son. Agitated: "A sparrow father. S   p   a   r   r   o   w"

Father: "What is that?"

Son with anger: "Why are you doing this?  I told you so many times, it's a sparrow. Don't you get it?"

Father gets up. 


Son: "Where are you going?"

Father signals with his hand "Wait a minute," goes into house, and returns with a book which he hands to the son. It is apparently a diary from the father's earlier days. The son looks at the book.

Dad: "Read ... aloud."

Son: "Today my youngest son who a few days ago turned three was sitting with me at the park when a sparrow sat in front of us. My son asked 21 times what it was and I answered 21 times that it was ... a sparrow. I hugged him every time he asked me the same question. Again and again ... without getting mad ... feeling affection for my little boy."


The son looks thoughtful for a moment, puts his arm around his father, pulls him in with a hug and kisses his head ...

Helped me. Hope it helps you.

Before and After

When dealing with Alzheimer's Disease, there are many before and afters. Over the last 11+ years, I know that Gregory and I have experienced many: some good, some difficult, some ugly.

The secret to success, happiness, peace of mind, etc ... I believe ... in dealing with the disease, is being able to be in the present, seeing the person with the disease as a person NOT only as the disease.

It is not easy to do, but I find that if I tuck away the sad feelings until a later date, I can enjoy the joy of the moment and express as well as feel the love that still exists so strongly between Gregory and me.

If I spend too much time thinking about the before's or after's, I loose the precious now's.

Emotions are not bad. Emotions do not have to be "out of control!" My emotions surface as a barometer of where I am currently in my life and of how I am dealing with being alive.

So I feel that emotions are not bad, they can be helpful friends if you allow them to be. I welcome them when they surface, I thank them for the messages they bring, and I sit with them awhile even though they may make me sad and cause me to cry. Better said: As I allow them to make me sad and allow them to make me cry, and that is OK.

But then I thank them again and send them on their way so I can get back to living the joys and blessings of my life, of which there are many.

Another thing I do, if I do not have time to "sit with them awhile" is thank them, send them my love, and tell them "Not now! Please leave! Come back later when I have time to sit with you!"

It usually works for me.

This post of before and after was prompted by two photographs my friend Jan Yourist texted to me as she was helping Gregory with lunch today. Manny, Gregory's helper is on a religious retreat so I asked Jan to cover for today's lunch and I will be with him later in the afternoon, for dinner. and after to watch TV.

The before and after pictured below demonstrate how joy can be found in the present.

Jan's caption for the first photograph was: "I am hungry." Gregory looks good, is finally over his cough and cold, is able to keep his neck strongly straight, is focused, and posed for Jan's iPhone. He may not look happy but Jan interpreted it as, "I am hungry." And that is a fair interpretation.

This "after" photograph shows Gregory happy, smiling, probably chatty, stomach pleasantly full with Lieberman's delicious Kosher cooking (and it is good, I taste it often!) I do not need to add a caption as the photograph speaks for itself!

In closing, I could allow myself to be sad. I could dwell on who Gregory was in the past and who he is now. I could dwell on all he has lost and all I have lost. I could think about his being at Lieberman in his new narrow environment and me being at home in my environment which continues to grow. I could think of what lies ahead for Gregory and what lies ahead for me. While who knows what really will take place and when, most likely my outlook is better than his.

But why do that when I can choose to be happy. Happy to see this lovely photograph, glad he is well taken care of, glad he beat the recent cold, happy that we have such good friends like Jan who will take an afternoon to help out, happy. I just feel happy. The sad is still there but I thank it and tell it that right now I would rather be happy and maybe some other time I will allow myself to sit a while with sad!

This post is dedicated to Jan Yourist (click here to visit her blog) for her support as well as Corinne Peterson (click to see her site), (who hates to be called my Guru but she is) who has helped me to find peace of mind during Gregory and my journey!

Happy Valentine's Day

Causes

http://www.abraham-hicks.com/lawofattractionsource/index.php

I have often thought that the mean, angry, selfish, cheap, entitled people who were some of Gregory's architecture clients (some were wonderful) helped bring on his Alzheimer's.

I first noticed the changes at the point of his dealing with one of his most manipulative, mean clients. Gregory had been hiding the client's dissatisfaction and threats and when it came out and I questioned him, told me "I thought that if I did a really good job they would come around." 

Also during the last month before his psychotic episode, when he seemed to be reliving something in the past, he was talking about "those mean evil people" in very angry tones. 

Being such a loving, accepting, calm person he worked so hard to be good to and for his clients and many took advantage of that. Could this have been what "broke" him?

The Truth of It

It is difficult for me to talk about all the things that Gregory and I go through. I had to think about what I wanted to say about tonight's experiences, felt a little embarrassed to be talking about them, but decided that in the hopes of sharing everything about our Journey with Alzheimer's I should not hold back.

Gregory forgot to wipe after his bowel movement earlier this evening so his underpants were a mess as was his behind. I started cleaning him up but decided to put him in the shower instead.

He fumbled with turning on the shower so I took over. Once he was in the shower, I pretended to use the toilet, so I could watch to see how much he remembered about taking a shower.

He shampooed his hair and then tried to use the rest of the shampoo on his hands to wash his arm pits, genitals, and behind.

He did not rinse his hair as he continued and got shampoo in his eyes. I told him to rinse. He did.

I asked him to put more soap on his hands to wash but he couldn't remember how to get the soap out of the pump dispenser.

Finally I took off my sleep clothes, got into the shower with him, and took over washing his "privates." I got out to dry myself while he rinsed.

He did not know how to turn of shower but instead turned it to the hottest setting. I intervened.

I gave him his nightly ration of chocolate and began my stretching exercises. I realized why I was angry at him, why I needed to tell him "at this rate diapers are next." Why I had to put into words the things he could not successfully do this evening. Why I had to be abrupt in my helping instead of kind and gentle.

The reasons, I realized, are that I do not want him to have to live  like this. I do not want to live like this. I do not want to accept that he will continue to get worse. I do not want to believe that I cannot make it all right, that I cannot make it all better. I do not want to think about not being able to guess what to do next or what he needs at any given moment.

I don't want any of this, but have no choice. I love this man, or at least who this man was once upon a time. I fear what this man will become. And who I will become.

Daily Affirmations

You may have seen these quotes from Abraham-Hicks before on my blog. Our nephew Mark Jr turned me on to them and for the most part I find them helpful in my day to day dealing with living with my life-partner who is living with Alzheimer's Disease. Sometimes they are hard to "translate" to our situation but it is always interesting to try, especially with the help of our niece Colleen. This one provides an interesting perspective. If you want to check out Abraham-Hicks, click here.

http://www.abraham-hicks.com/lawofattractionsource/index.php

Dear Abby,

Pauline Phillips, the woman you probably all know as Dear Abby and who wrote under the name Abigail Van Buren, was never afraid to bring tough topics into public discussion. Alzheimer’s disease was no exception.

In 1980, long before her own diagnosis with this devastating disease, she brought dementia into the spotlight when she published a letter from a woman who had recently learned her 60-year-old husband had Alzheimer’s.

The woman, who signed her letter “Desperate in New York,” wanted guidance on how to cope. She felt isolated and helpless. She needed information.

Dear Abby’s reply began, “You are not alone.”

And she wasn’t.  At the time, it was felt that Alzheimer’s disease was a major epidemic in the United States.  Today, it is estimated to afflict more than 5 million people.

Dear Abby directed her to the Alzheimer’s Association, a newly formed group that came together to assist people with the disease and their families, raise awareness, advocate for state and federal help, and increase government funding for research in hopes of finding treatments and a cure. My personal involvement with the Association resulted from the fact that my father, three of his brothers and two of his sisters died from Alzheimer’s disease.  In addition, in 2012 one of my cousins died from this disease.

At the time Dear Abby wrote to ‘Desperate in New York,” I was president of the New York Chapter as well as secretary/treasurer of the National Alzheimer’s Association. The national headquarters were run out of my law office in New York City, and my staff and I were fielding calls for information and referrals.

Within two weeks of the Dear Abby column being published,  we were inundated with more than 22,000 pieces of mail requesting information. Dear Abby put Alzheimer’s disease in the public spotlight and put the Alzheimer’s Association on the map.

In the years to come, Mrs. Phillips continued to raise Alzheimer’s awareness, publishing numerous Dear Abby columns that connected those needing support to Association resources. Then, 15 years after first bringing the topic to readers across the globe, Mrs. Phillips – a woman known for her strong intellect and straight-talk – began showing signs of the disease.

Yesterday, after living with Alzheimer’s for more than a decade, she passed away at the age of 94.

Mrs. Phillips once wrote: “The purpose of life is to amount to something and have it make some difference that you lived at all.”

When Alzheimer’s disease finally becomes a distant memory, when a cure is discovered, Mrs. Phillips will be right on top of the list of  people who humankind will owe it’s gratitude for ridding the world of this terrible disease.

The difference she made is profound. By encouraging people to talk and providing information when it was needed, she changed lives.  She let those living with Alzheimer’s know they aren’t alone. By spreading awareness of Alzheimer’s disease, she helped enable the Alzheimer’s Association to get public funds to help and support families, educate caregivers, and increase the research budget from about 2 million in 1980 to more than 450 million today.

I wish to express my personal condolences to the family and appreciation to Mrs. Phillips for everything she has done to eliminate Alzheimer’s disease.  May she rest in peace.

Lonnie Wollin

About the Blog Author: Lonnie Wollin is an attorney in New York and one of the founders of the Alzheimer’s Association. He remains actively involved with the organization.

Is an Alzheimer’s vaccine on the way?

New research suggests we may be one step closer to treating -- and preventing -- the degenerative brain disease

BY KATIE MCDONOUGH

A team of researchers from Université Laval, CHU de Québec and pharmaceutical firm GlaxoSmithKline (GSK) has discovered a way to stimulate the brain’s natural defense mechanisms in people with Alzheimer’s disease, opening the door to the development of a treatment for the degenerative brain illness — and a vaccine to prevent it.

As reported by Science Daily:

One of the main characteristics of Alzheimer’s disease is the production in the brain of a toxic molecule known as amyloid beta. Microglial cells, the nervous system’s defenders, are unable to eliminate this substance, which forms deposits called senile plaques.

The team led by Dr. Serge Rivest, professor at Université Laval’s Faculty of Medicine and researcher at the CHU de Québec research center, identified a molecule that stimulates the activity of the brain’s immune cells. The molecule, known as MPL (monophosphoryl lipid A), has been used extensively as a vaccine adjuvant by GSK for many years, and its safety is well established.

Over a twelve-week period, researchers gave mice with Alzheimer’s symptoms weekly injections of MPL. The results were dramatic, eliminating up to 80% of senile plaques and significantly improving cognitive function. The mice were also able to learn new tasks over the same period.

As it stands, researchers see two possible uses for MPL. It could be used in injections to slow the progression of the illness for people with Alzheimer’s disease – or it could be incorporated into a vaccine.

The vaccine would stimulate the production of antibodies against amyloid beta. It could be effective in promoting natural immunity in people who already have the disease, but it may also be effectively administered as a preventative measure. This is a profound breakthrough in the study of the illness, researchers say, and offers new hope for those with significant genetic risk factors and a family history of Alzheimer’s.

The results even surprised the researchers themselves.

“When our team started working on Alzheimer’s disease a decade ago, our goal was to develop better treatment for Alzheimer’s patients,” explained Dr. Serge Rivest, professor at Université Laval’s Faculty of Medicine and researcher at the CHU de Québec research center. “With the discovery announced today, I think we’re close to our objective.”

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?

Roomates

This article was recently published by our friend John Schimmel in a new magazine written by and about GLBQ people and their family and friends. John has been a long time friend of Gregory's since college days.

IN APPRECIATION OF MY COLLEGE ROOMMATE

By

John Schimmel

This is the story of my own coming out. I am not gay – I don’t mean that kind of coming out. My coming out was from a place of myopia.

Freshman year of college I pledged a fraternity. It housed the Adelphic Literary Society. The eating club cook was an enormous, Czech psychic. Kegs were tapped at parties but the intoxicant of choice was acid. The sport of choice was Frisbee. It was not your everyday fraternity and I immediately regretted my choice.  In the long run it turned out to be the perfect place for me, which is probably all I need to say about myself.

The fraternity house had a huge music room with an ancient piano that had to be sent out to be refurbished shortly after I joined. When it was returned it sat for a time in the entry hall before being rolled back to its home. I was upstairs one day and heard music wafting up through the stairwell. I went downstairs to find a tall, skinny, pale sophomore we’ll call George playing Eric Satie’s “Gymnopedie.” Not  just playing it. Breathing exquisite life through his fingers into the music. What happened next was the heterosexual equivalent of love at first sight.

Eventually, George asked if I wanted to share a two bedroom suite in the frat house the following year. I did. I went away for the summer. I came back ready to move in – and discovered that  George had gotten there before me and decorated the suite. Zebra striped curtains hung in the huge bay windows.

I was furious. I told anyone who would listen that the place looked like a gay brothel.  I refused to move in for weeks – I can’t remember where I slept but I wanted nothing to do with the image George was projecting for us.

I eventually relented and unpacked. George was incredibly forgiving. As things thawed we wound up spending hours and hours talking late into the night. George shared his passion for architecture with me. He had not officially come out yet but he confessed his discomfort about a crush he had on two very beautiful fellow students – this was an all-men’s school at that time. He helped me deal with a crush another man developed on me, a man I loved as a friend and did not want to wound.

The following year, I joined George and two other friends renting a local beach house. It was right on the Long Island Sound, affordable only because it was off-season. We cooked feasts, walked the beach, watched snow collect on the frozen tide and undulate as the current moved beneath. All activity halted for sunset.

The following year we rented it again, minus George because he’d graduated. He’d started dating a fascinating woman by then. Toward the end of my senior year he arrived at the house, handed me a guest list, said he wanted to get married on the beach, and left me to plan his wedding. It turned out to be a glorious, quasi-hippy affair. The morning after the wedding I found George in bed with his new bride and one of the beautiful boys he’d had a crush on. But he’d still not declared his sexual preference.

I can’t recall how long the marriage lasted. I remember visiting George and his wife in Boston and going with another couple for a spectacular twelve course Italian meal in a room that held only the six of us behind the kitchen in an out-of-the-way restaurant. I remember being drunk enough to later argue with George’s wife about her desire to have a kitchen with identical unmarked mason jars for all the spices.  Why would she not label the jars? What was the point?

At some point I learned George was divorcing his wife. He’d met a man and fallen in love.  The lover was George’s opposite in every way – short to George’s tall, flamboyant to George’s reserved. George liked to live without clutter; his lover was a collector of tiny things – tiny houses, tiny furniture, tiny dice, tiny playing cards, all neatly curated in display cases. They eventually moved into a wonderful old house by the railroad tracks in Evanston, Illinois. The kitchen was filled with un-labeled Mason jars filled with spices and teas.

When I decided to marry the beautiful and brilliant Chicago native I’d been dating I sent George and Mark our guest list and told Greg it was his turn.  The two of them found the location, caterer, florist, photographer. The day of the wedding, which as to be outdoors, it rained so hard there were ducks swimming on the lawn. But George and his lover clearly had some sort of magical power because it cleared up for exactly the amount of time we needed. The storm broke again as the last of the bartender’s equipment was loaded into his truck.

During one of the moments when it was legal George and his lover eventually married. Mark retired from teaching and helped George run his architecture firm. They had what seemed like an idyllic life. But now, after forty years together, George has developed early onset Alzheimer’s. My brilliant roommate is not always home now, though there are flashes of his old self. But he pretty much requires constant care. 

George and  Mark have had to shut down the architecture firm. They sold George’s piano, a family heirloom, because he could no longer play. They sold their house where my wife and three kids used to visit at Thanksgiving.  Mark donated his collections to  a children’s museum. The museum has built a special gallery that he curates, but he has largely dedicated himself to taking care of George. He gently helps George finish sentences. He sends out email notices of George’s accomplishments and status and writes beautifully about the disease about which he has had to learn so much. He could not be more loving or supportive or present for my friend whose homosexuality I once scorned and feared. My appreciation for what he is doing and my respect for his courage under heartbreaking circumstances bring tears to my eyes. I defy anyone to find a couple more dedicated to one another.

In college, George and I took the same English class once from an eccentric lecturer who, on the first day of class, told us the topic for our final paper. He gave us the date and even the hour it would be due. He said he would never mention it again but that at the appointed hour “the train will leave the station.” Translation: He would flunk anyone who tried to deliver late. As the date approached, George bought a small suitcase, affixed a railroad baggage tag to it, and put in it his final paper together with an album the professor was to listen to while he read the paper. Needless to say, George aced the paper.

I am embarrassed by how many years it took me to understand that the zebra stripes were hung in the same spirit. George wanted to tweak my straight-guy-from-Beverly-Hills view of life.  I tell George and his husband, when we talk, that I love them. The ability to say that to two men is one of George’s gifts to me. But I forgot to thank him, when he still had a fully-functioning memory, for letting me move into the suite he’d decorated with such profoundly, wonderfully funny bad taste after my spectacularly immature hissy fit.  I can send this piece to him, though. That’s the joy and danger of putting something in writing: It’s always there as a reminder.

Things For Which to be Grateful.

The other day I was analyzing my life. No, not on paper but in a few minutes of day dreaming. When I arrived back, I realized that my life was pretty predictable and I liked it that way. I know that things can always change on a moment's notice but at least for today, and probably tomorrow, my life is predictable.

For example, I no longer worry about career path. I am what I am and while I still have ambitions, I do not worry about my next job, my next college degree, my next obligation to the world. I only have to worry about my next obligation to myself and to those I love.

I do not have to worry about a growing family, about sending my kids to college, about having my kids move back into the house, about buying and furnishing a new house. I do not have to think about moving, about which city I want to live in, about needing a new car.

I have a wonderful family of relatives and a wonderful family of friends. Sometimes it is difficult to keep in touch with all of our friends let alone worry about finding new ones. For the most part my friends have been friends for ten, twenty, thirty years. By now we all know each other pretty well, accept each other for who we are, and do not stand on pretenses or assumptions.

I can choose from any number of favorite restaurants at which to eat, grocery stores at which to shop, cinemas at which to watch movies, museums to attend, operas musicals and plays to see, paths in the neighborhood on which to walk.

Having reached a certain age I do not have to do things I do not want to do or go places I do not want to go. Since the aging process is a slow one, very often by the time an ability is gone I find that I do not miss it.

Even my life with Gregory has become predictable. Whenever I think he is, he isn't. Whenever I think he knows, he doesn't. When things are supposed to be in place, they usually aren't. When tasks are reportedly accomplished most likely they are not. When conversations are initiated by him, they do not reach completion. When memories are searched they remain hidden. Associations are not associated and connections are not connected.

I have learned to live this way and even on our journey with Alzheimer's, I am strangely content.

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!

The Iron Lady (CAUTION: Movie Spoiler)

Today Gregory and I went to see The Iron Lady, a movie about Margaret Thatcher who is played by Meryl Streep. After seeing Ms. Streep in Julia and Julie, I knew we had to see this one. Miss Streep is one of THE actors of our time.

Early in the movie I realized that part of telling Ms. Thatcher's story is that she, at 82, suffers from dementia which has been labeled Alzheimer's Disease. Totally unprepared. So you can imagine I cried through a lot of the movie. Not sure how Gregory felt about it. Maybe we'll discuss it in a little while over dinner. Then again, why ruin a good meal. Maybe before bedtime. Then again, why ruin a good night's sleep?

Below is the link to an article I found on the internet which talks about Ms. Thatcher's daughter and her autobiography.

Click here to go to Mary Kenny's article.

Conjugation

Grammatical conjugation is the  the variation of the form of a verb in an inflected language such as Latin, by which are identified the voice, mood, tense, number, and person. In Spanish an example of conjugation of the verb hablar (to speak) is hablo, hablas, habla, hablamos, hablais, hablan. Translated into English it is present tense I speak; you (informal speak;) you (formal) speak; he, she, or it speaks; we speak, you (plural informal) speak; they (you plural formal) speak. 

One can do the same for past tense (hable,) I spoke; imperfect tense (hablaba,) I speak (over time;) future tense (hablare,) I will speak; subjective (hablara,) I will have spoken; etc.

In English, we are not as aware of verb conjugation because the verb changes very little and we use the pronoun to help. For example: to run: I run; you run; he, she, it runs; you (singular) run, we run, they run, they (plural) run. The verb form keeps to "run" or "runs." Much easier in English.

Sometimes I enjoy the nonsense of conjugating English words because you can conjugate them and it doesn't really matter to their use. This whole treatise  lead me to a poem dealing with Gregory's Alzhiemer's. A long trip but here we are:

I walk

You walk

He walks

We walk

The path together.

A New Observation

THE SITUATION:
In dealing with the "day-to-day" of dealing with Gregory as he deals with his "good and bad days," I have made a new observation or maybe rediscovered a previous observation or some combination there-of. (This sentence, by the way, is an example of the dense direction my writing sometimes takes which is complex in a way that forces the reader to slow down and really focus on its meaning. Maybe this is what Gregory has to go through with all things now-a-days?)

THE BACKGROUND: Previously I have talked about how sometimes helping Gregory is a question of more or less. My intervening, or suggesting, or helping, or taking over is a question of making the situation more painful or less painful. More insulting or less insulting. More difficult or less difficult. But none-the-less painful, insulting, and/or difficult. Follow that?

THE SETTING:
Here we are now at the beginning of Fall, 2011. You and I are making subtle changes easily to adjust for the change in weather, not so for Gregory. What he might wear on any day takes finding or asking for the weather forecast, deciding how that might apply to what type of clothing to wear, selecting that clothing, getting into the clothing, and then deciding what type of jacket, if any, to put on before going for his walk. He is not always successful at doing all this himself so sometimes he will ask for help, other times I will offer help, and still other times he returns to the apartment three times until he gets it right. On the rare day, he is totally on target but a day or a week later, the season continues on its way and needs change and Gregory is unable.

THE OBSERVATION:
I realize that sometimes (notice SOMETIMES is used a lot if only because it is not NEVER and not USUALLY) when I try to help, I actually cause more problems for both of us. I distract him, inadvertently cause more confusion, or he doesn't understand the words I am using, or whatever. (I think WHATEVER might be my new mantra!) I find myself "jumping in" too soon to try to help Gregory avoid frustration but then I cause both of us to become frustrated. It is very difficult for me to watch him struggle through an activity or decision so I "jump in." Is giving him "space" and "time" to work through a situation "more difficult" or "less difficult" for me? I am beginning to think that I will be and we both will be better off by my slowing down before helping. Another approach would be to announce, "I'll be here if you need me, just ask." I could also sit quietly after letting him know, "I'll wait quietly until you need me." If the situation does not allow me to give him time and space, I need to keep my voice even, my temper in check as I say something like, "Here, let me do that. I don't mind."

THE EXAMPLE:
Now that the days are cooler, Gregory needs to put on something warmer when he gets up for his morning breakfast preparation and sitting at his computer to do the daily e-mails and news. We switched to his heavier work out pants and shirt which we call his "grays." But he has been having problems assembling his outfit the night before so it will be ready in the morning in the warm bathroom. He has not been able to get past putting the "grays" in the bathroom to the need for underpants, undershirt, and sox. Often he does not recognize those words or is unable to say them. I designed a sign with a picture of each item. To me it made sense that this would make it easier for him to remember everything he needed. It didn't. I explained. He struggled. I explained again. I didn't get angry but I know Gregory senses my frustration. That was when the observation came that sometimes my trying to help causes more harm than help. Sure enough last night he got everything he needed together and into the bathroom without my help or the sign's.

THE LESSON LEARNED (for how long?):
Best to wait until he asks for help or if his struggling goes on for too long or if his frustration level gets too high. This is while the activity is at the "SOMETIMES" level. The need for my constant awareness and monitoring of the ongoing interactions and activities our life is the difficult part. At a certain point in time, when the "NEVER" or "USUALLY" level arrives, I will take over and do it for him every night, change expectations and routine. Down the road, I will let him try it by himself again and if he is unsuccessful permanently be in charge of that function.

FINALLY: I will try anyway to do everything I can (for example the sign) that might possibly help and if it doesn't work I will do something else, I will just try not to beat myself  up for trying.

Feline Alzheimer's

Cats, like their human companions, are living longer, and like people, can get diseases of old age such as arthritis, high blood pressure, kidney problems and dementia.

10 Clues that Your Cat Has Dementia

1. Spatial disorientation or confusion - getting trapped in corners or forgetting the location of the litter box. House-soiling is the most common reason for referral of old cats to animal behaviouralists.

2. Altered relationships either with their owners or other pets in the household - increased attention seeking or aggression

3. Increased irritability or anxiety, or decreased response to stimuli

4. Changes in sleeping patterns

5. Inappropriate vocalisation such as loud crying at night

6. Loss of memory, such as forgetting commands or breaking house training

7. Changes in activity - aimless wandering or pacing, or reduced activity

8. Lack of interest in food, although some cats actually want more food.

9. Decreased grooming

10. Confusion about time, such as forgetting that they have just been fed

Cats with CDS or feline dementia can still enjoy life if their symptoms are recognised early enough. Treatment options include:

• food fortified with antioxidants and vitamins,
• a stimulating environment with toys and playtimes with their favourite human
• medications prescribed by the vet.

However cats who have advanced dementia or CDS need to feel safe, and might not cope with changes to their food or routine that could frighten or confuse them.

Such cats should have a safe quiet space, perhaps just one room, where they can find everything easily and feel in control.

Dr Gunn-Moore also suggests applying synthetic feline appeasement pheromone to the cat’s rug or cushion can help to calm stressed or nervous animals.

Read more at Suite101: Does Your Cat Have Alzheimer's?: 10 Symptoms of Feline Dementia | Suite101.com http://sue-cartledge.suite101.com/does-your-cat-have-alzheimers-a42499#ixzz1Zl8qmEjn