Grieving and Wondering

• Where does the ability to play Chopin's Ballad #43 go when a person dies?
• Where does the knowledge to design a house that people see as beautiful go?
• Where does the ability to choose colors and furniture for a room that are peaceful go?
• How does the nurturing without qualifications go that came so easily?
• How does the creativity in so many areas like music, art, design, etc disappear?
• How does the culinary skill that helped prepared so many delicious meals retreat?
• How does one account for a life well lived?

The physical evidence of Gregory's abilities, knowledge, creativity, nurturing, and skills continue to exist in form here and there around the condo and also in memory and imagination but the physical evidence of Gregory himself only continues to exist in photographs and in his Grandma Carrie's sewing box in the from of its basic element: carbon.

I have not created this quote but you may use it: Death like birth is one of the great mysteries of life.

Today is a ZERO Kind of Day

ZERO ability to share
ZERO ability to communicate
ZERO ability to express self (words, gestures, showing)
ZERO ability to engage in time
ZERO ability to engage in activities by self
ZERO ability to dress self
ZERO ability to undress self
ZERO ability to identify bodily function needs (hunger, thirst, elimination)
ZERO ability to identify discomforts (cold, warm, in pain)
ZERO ability to toilet self (urination, defication)
ZERO ability to eat without continued prompting (breakfast, lunch, dinner, coffee & cookies, snack)
ZERO ability to assist with household chores
ZERO tolerance to be by self

Can sit
Can stare
Can watch TV
Can thumb through newspaper (not read necessarily)
Can thumb through a book but not read it
Can listen to music
Can pet cat
Can go for a walk

Can say "I love you."

"Simple Joys" or "More Than You Would Ever Want to Know About Our Bedroom Lights"

As Gregory continues to leave his abilities behind, I continue to creatively compensate. When I am successful I feel very good. When I am not I feel hopeless. How's that for mood swings?

We have always had lamps by our bedside. Perhaps the new condo was a little darker then we were used to, what with the concrete ceilings and all, so we added two "up lights" on top of my computer desk and two on top of the bookcases on the other side of the room.

The switch on the wall controls, as in most modern buildings, one side of each double outlet. So when plugging in your fixtures, use the correct side of the outlet and you can control all of the fixtures in the room with one click.

I used to call them lamps but in the architecture world, lamps refer to bulbs while fixtures refer to lamps. Get it?

Now the switch concept works well but when you are in bed, finished reading, half asleep and ready to call it quits for the evening, getting out of bed is a pain. You could pop out of bed and switch them off individually or at the wall switch by the door to the bedroom.

When the need arises to turn on a light during the middle of the night, one could kill themself  in the darkness on the way to the lamp or wall switch.

Being a creative person, I rigged up the bedroom lighting into two switched extension cords, one of which controls the lights on Gregory's side with the switch at his bed table and the other on my side. This way we could turn off all the lights at bedtime (and on if necessary during the middle of the night.)

In the morning turn them back on at our bedside tables and the entire room of lights can again be controlled by the switch on the wall.

Following all this?

Slowly Gregory could not figure out how to turn off the lights on his side of the room. He could not locate the switch fastened to the back of his table and if he could find it, did not know how to work it. One night he could, the next he couldn't. It was a case of diminishing returns with the "not able" increasing and the "able" decreasing. Finally I would hop out of bed and do the light thing.

Next, I discovered a system at the hardware store whereby the extension cords could be plugged into a remote button. My side worked the same way (since I do not have Alzheimer's) and Gregory got this little box where he just had to push the ON button or the OFF button to control his lights. I was so hopeful.

The new system worked for only a little while and not without confusion. Which one of the buttons was the ON button and which was the OFF button (even though clearly marked.) And, "Where did I put the damned box anyway. Can't find it."

I felt bad taking over the lamp lighting ceremony but Gregory didn't seem to mind. First  I did my switch then I pushed the buttons on the little box to do his side of the room. "Good Night. Love you."

Next I got to thinking, in my "Control that in life which you can since there is so much you cannot," mood. Wouldn't it be nice if I could control all of the lights, since I was now in control of them, with one switch instead of several plus the little box. In high end homes, often there are additional switches on the wall by each side of the bed in addition to the wall by the door to control the outlets.

Wouldn't that be nice just to roll over and with one flick of a switch control all of our bedroom lights? I had our electrician in for another small job and proposed my plan to put a switch on the wall by my side of the bed. "Can be done he said but you would have to move your computer desk so I can get at the outlets behind and run the new wire."

I was not about to unload the desk and all of its millions of wires for the "wireless" network so I killed the idea. But my mind kept working and eventually I came up with a way of using those same switched extension cords to unite all of our fixtures. It works. All I had to do was plug Gregory's cord (with switch on) into my cord (with me controlling on and off,) attach it to my night table and now I fully am in control. Every night when I say "Good Night and Love You" I feel a little spark of joy at being able to control all fixtures with one flick.

P.S. You may be thinking that the bedroom looks like a wired mess with all these extension cords, which any electrician will tell you can be dangerous. Well no. They are minimally few, encased in wall mounted moulding channel covers, and as safe as can be. My dad would be proud of me (considering he was an electrician.)

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.

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.

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

When Will It End?

I hate my life right about now. I am living with tears. I am lonely. I am confused. I am frightened. I am confused. Do I feel better now that I have gotten that out? No.

I have decided to take over making his breakfast completely every morning for a while (maybe forever.) I nicely told him that he would have to stay in bed until I was ready to help, that unfortunately this is where we are with our life as of now, and that it means more loss of independence for him.


Seeing that he was upset, I told him that I need to talk about it with him and that I know it mades him feel bad and that eventually I  will be able to avoid discussing it. I just don't feel comfortable making unilateral decisions without telling him about it. I am sure that one day soon I will be able to do that as well.


He couldn't find the muffins in the refrigerator this morning, didn't know how to use the butter spray, forgot to warm the muffin up in the microwave and then wondered why it was cold. Instead of just sitting at his place at the counter, he was trying (again) to perch himself on the edge of the stool in a very awkward position in front of the drawers with no knee room because that is where he put down his muffin.


Until now he has been making his own breakfast but only at 70-80% success since returning from Mexico. Then I have to intervene or explain with explanations that are not understood. Taking over completely will be easier ... at least for me.


I will also begin to lay out his clothes every day because he not only cannot do this easily but also cannot judge what to wear based on the weather. Yesterday it was 90 out and he said he wanted a light shirt. I put a short sleeved polo out for him. As we were about to leave, he had on a long sleeve shirt and I questioned him about the short sleeve one. He said this was the one he wanted. I come to find out that he had on both shirts, thinking the Polo was an undershirt, however, when I named the "undershirt" he is not able to make an association with the item.

Until now he has been getting dressed on his own but only at 70-80% success. Then I have to intervene, or explain with explanations that are not understood. Taking over completely will be easier ... at least for me.

I have been handing him his night time sleepwear and laying out his morning sweats. Easier for him and for me.

I have decided to take over fully for breakfast and getting dressed because these skills come and go and get scrambled so frequently that it must be proof that he can no longer handle them. I get frustrated with giving instructions that cannot be followed or do no get followed or get followed incorrectly. 


In my life, I am used to telling or asking someone for something and then letting go knowing it will be done. Not so anymore with Gregory. So metaphorically, like the nurse in the old people's home, I will hand him his meds and stand there while he puts them in his mouth and swallows. Hope I do not have to start checking under his tongue to make sure he isn't spitting them out later.


Did I mention that last night at bedtime he was trying to read and again forgot that he needed his glasses.

 

New Hope for Mice

This photograph was part of the Wall Street Journal article which I just posted. I was reading the article on my iPad (which is a new behavior for me) and when I flicked to the next page there was a full life picture of these mice who were part of the study. It compares normal mouse nest building behaviors and Alzheimer's Mouse nest building inabilities. The final picture shows the Alz Mouse, after the "miracle drug," being better able to build his nest. 

Just looking at the photographs and reading through the captions brought me to sobbing. I was so sad for the mouse but seeing the obvious loss in the mouse'a ability to accomplish something so innate, simple yet crucial like nest building brought home what Gregory goes through on a daily, if not hourly basis. 

I will be better in my support of him.

Helpful Hints

These hints were taken from Perspectives: A Newsletter for Individuals with Alzheimer's or a Related Disorder. They were told by the person diagnosed with the cognitive imparement. See ordering information at the end of this post.

1) If someone puts me under pressure to remember an appointment, issue, or location of an item, it can almost become impossible to re- trieve the information. I will ask the person to give me some time (not under pressure) and then I can generally respond rather quickly.



2) Friends of the person with memory loss should be encouraged to give their name when they make a phone call or meet on the street because the person with memory loss may not be able to re- member your name.


3) Friends and family need to recognize that they can’t control the course of our memory condition, but they can team with us rather than attempting to control us.


4)"I find memory loss is in some way very freeing. You don't have to remember yesterday or tomorrow, you just live to- day,”

SUBSCRIBE TO Perspectives
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9500 Gilman Drive – 0948 La Jolla, CA 92093  

I Have Lost Myself

SPOILER: HEAVY READING AHEAD...

In 1996, Dr. Konrad Maurer and his colleagues, Drs. Volk and Gerbaldo, rediscovered the medical record of Auguste Deter. In it Dr. Alzheimer had recorded his examination of his patient,

"What is your name?“

"Auguste.“

"Family name?“

"Auguste.“

"What is your husband's name?“ - she hesitates, finally answers:

"I believe ... Auguste.“

"Your husband?“

"Oh, so!“

"How old are you?“

"Fifty-one.“

"Where do you live?“

"Oh, you have been to our place“

"Are you married?“

"Oh, I am so confused.“

"Where are you right now?“

"Here and everywhere, here and now, you must not think badly of me.“

"Where are you at the moment?“

"This is where I will live.“

"Where is your bed?“

"Where should it be?“

Around midday, Frau Auguste D. ate pork and cauliflower.

"What are you eating?“

"Spinach.“ (She was chewing meat.)

"What are you eating now?“

"First I eat potatoes and then horseradish.“

"Write a '5'."

She writes: "A woman"

"Write an '8'."

She writes: "Auguste" (While she is writing she again says, "It's like I have lost myself.")

Alzheimer concluded that she had no sense of time or place. She could barely remember details of her life and frequently gave answers that had nothing to do with the question and were incoherent. Her moods changed rapidly between anxiety, mistrust, withdrawal and 'whininess'. They could not let her wander around the wards because she would accost other patients who would then assault her. It was not the first time that Alzheimer had seen a complete degeneration of the psyche in patients, but previously the patients had been in their seventies. Deter piqued his curiosity because she was much younger. In the weeks following, he continued to question her and record her responses. She frequently responded, "Oh, God!", and, "I seem to have lost myself". She seemed to be consciously aware of her helplessness. Alzheimer called it the "Disease of Forgetfulness".

CUE THE TEARS ...

Managing our Finances

When asked for a survey, 

• What was it that happened that made you realize you needed to take over your loved one’s finances?
  
• What did you expect it would entail? What does it really entail?
  
• If you have been doing this for awhile now, what do you wish you knew then that you have learned now?

This is how I responded. 


I have found that over time I take on more and more of the responsibilities that I used to share with or which used to be done alone by my partner. This "taking over" has become a natural progression of being able to continue dealing with the twists and turns of Alzheimer's. My gradual "taking over" helps both of us feel less frustrated. One does what one has to do. Complaining and fretting doesn't help what is.

I am fortunate in having a well founded, over 35 year committed relationship with Gregory so we are "used to each other," and have build a high level of trust in our love for each other. He continues to be aware of what he is NOT able to do and looks to me for support, which I am able to give gracefully (most of the time.) I read on a web site that Circle of Care recently reviewed that if I am not able to be gracefully caring all of the time ... there is no question that at least I do care all of the time. He has been able to give up his grand piano, driving, cooking, and more with little or no fuss and I have been able to compensate. His quality of life and sense of self continues to be strong. From what I hear, this might be a miracle.

Running our daily financial affairs is no big deal. What was a big deal, especially for a same sex couple without the benefit of being legally married, was: 1) getting our trust in order, 2) getting our power of attorney for property and health care taken care of, 3) arranging for Gregory to receive Social Security Disability and Medicare at 55 when he was diagnosed with Early Onset Alzheimer's. It will become even more difficult when or if he needs to go on Medicaid. We had a wonderful elder care lawyer to help, the State of Illinois Department on Aging (it seems that most states have something like this,) and gratefully I am intelligent enough to figure our what we needed to do.

What do I wish I knew then that I know now? YOU CAN DO IT! The fear and depression can slow you down but YOU CAN DO IT! And there are people and organizations out there for the express purpose of helping you. Don't feel overwhelmed even though it is overwhelming. Take one bite of that elephant at a time, chew, digest  and before you know it that elephant will have turned into dinner. YOU CAN DO IT!

Breakfast Tea

Every now and then something happens that moves me to tears. Every morning Gregory makes his own breakfast. Every now and then Gregory gets confused in the process. This morning such an occurrence has moved me to tears.

"Oh shit!" comes Gregory from the kitchen.

"What's the problem?" I inquire sitting at my computer in the bedroom.

"My tea," comes the answer.

I go into the kitchen to see how I can help. Turns out he forgets to put a tea bag in his mug and this stops him cold. He remembers to set up his breakfast tray, his cereal and fruit are ready, the green mug sitting on the tray. He fills the electric kettle with water and switches it on. Boiling, the kettle turns itself off. This is where the confusion begins. Such confusion that I am not really sure myself what is going on.

"I forgot my tea. I guess I'll have to start over."

"But you just forgot to put a tea bag in you mug." He looks into the cereal cabinet for the answer. I open the tea cabinet, taking out a tea bag and putting it into his mug. I pick up the kettle, pouring the hot water into the mug. Explaining as I proceed.

"That's all there is to it. You don't have to start over. You just forgot to put the tea bag in your mug."

"Oh. OK. Thank you."

Every now and then something happens that moves me to tears. Every morning Gregory makes his own breakfast. Every now and then Gregory gets confused in the process. This morning such an occurrence has moved me to tears.

Gregory doesn't seem too upset by all this. Then why am I moved to tears? At the loss? At his confusion although he doesn't seem too bothered by it? At what it must feel like for him but in my imagination not his? At my fear? Tears are gone now. The day continues.

Just Checking In

Hi. It's been a while since I've posted so I guess you can assume that for now (how ever long that may last) things have settled down. That either means that Gregory's changes and lapses have slowed down or he has not been challenged or confused recently or it means that I have reached a new level of coping, supporting, anticipating, covering, running interference, etc.


Oh, did I mention that that last Tuesday: 1) He didn't remember how to use his key to get into condo ... but did have sense to get help from management office. 2) Because the ususal “lunch meat” in the refrigerator ran out I left him a tin of tuna for lunch but the change caused him to be totally confused about how to make lunch ... but did have sense to go out to a restaurant. and 3) He forgot how to run DVD again even though it is “one button on” and “the same button off." Then he knew how to turn off the DVD after the movie with the “one button” ... but when I complimented him, he thought he had done it all wrong and apologized.


But you know what, I remained even and that helped both of us.

Half Full or Half Empty

Is the glass half full or half empty? At dinner, I usually drink two glasses of water and Gregory usually doesn't drink any of his. The usual routine is that I hand him my empty glass and he gets me a refill from the water tap in the refrigerator. Sometimes he asks if I want more ice.

This evening I handed him my glass and asked for "A little more ice also please." In the time it took for him to put my glass down on his place mat and finish chewing his mouthful, he forgot which glass was mine.

First he picked up his glass but when he got to the refrigerator he realized it was already full. He brought it back. Put it down. Studied the area. Then pointed at the empty glass and said, "This one must be mine." Which confused him more.

"No, mine is the empty one."

"Oh." He picked up the empty one, took it to the refrigerator, filled it half way, and returned it to me. I thanked him, not commenting on the lack of any additional ice.

Now you tell me, half full or half empty?

A Recurring Theme

If you have been following this BLOG, or the events in Gregory and my life, you may have noticed that there seems to be a recurring theme: Expect Less, Love More.

As the disease continues to play havoc with Gregory's brain (I can actually picture the cells being destroyed one by one and the brain connections being snuffed out one by one) my learning curve and the progress of Gregory's Alzheimer's continues to present new, and different, and unexpected, and unfathomable experiences for me.

My goals are to do the best I can to keep him content, healthy, and safe. A sub-goal is to help his life be meaningful for him, to help him keep his dignity, to help keep him useful so he knows he is needed.

My goals might also include the same for me, especially keeping my mind and body healthy. I have to admit that while I know the importance of these personal goals about me, and while I do work at them, they do suffer.

As the changes continue to take place, sometimes at an accelerated rate, new levels difficulty in accomplishing my goals for him seem to come into play. For example last night there were several instances in which he was unable to follow very simple, one step directions.

They were based on easy to do (at least in my mind,) basic, up until now successful skills for him. One was to put cup cake papers in the cup cake tin. Another was to fill the dinner water glasses again for use at bedtime. A third was to pick up the cat's food for the evening.

Another example just happened as I was writing this BLOG. While he still seems able to us the computer to read his e-mail, see the day's news, and play an online game with Ken ... the computer and its use entails such a complex set of skills that he usually get confused and comes to me for help.

This time he was looking at the TRASH list of his e-mail, not today's e-mails. He was asking for my help but I didn't know how to help. The possibilities of why he needed help were so numerous that I didn't know where to begin. I didn't know how he ended up being in the TRASH. Explaining what was going on would only serve to confuse him. Asking questions to try to figure out how he got himself "cornered" only serves to confuse him more. Asking what he did just before he asked for the help is no longer part of his memory.

Last night was so frustrating that each time  I just asked him to stop helping and I took over. His feelings were hurt but I knew that if I tried to explain what was expected, or how to do what I requested, he would only get more confused and I would get more frustrated (read angry.) So I just gently said, "Never mind honey, I'll do it." But he got his feeling hurt anyway.

It was then that I realized that currently, in many things, my helping him has  become a choice between hurting his feeling less or hurting his feelings more. Let me repeat: hurting his feelings less or hurting his feelings more. Less is the obvious choice but non-the-less it hurts his feelings. So I cried.

Until now I have held the belief that in an effort to help him keep his dignity and sense of usefulness, it was worth the frustration, aggravation, and sometimes anger that I suffered when he could not follow through.

I no longer believe that it is worth my frustration, aggravaiton, and sometimes anger and especially not my emotional and physical health, when he cannot follow through.

So I will need to analyze each request for help more carefully and judge by his chance of success to determine if I even want to ask for help in the first place.

I will need to ask less, expect less, and love more. Him and myself.

He came to me to sooth my upset and said, "You can't always be perfect. Neither can I." So I cried more.

Unbelievable

Amazing how the human brain works.

Amazing how the human brain doesn't work.

Gregory was beginning to get his breakfast together. I was awake so I offered to make him oatmeal. He liked the idea. I said, "Get everything else ready for your breakfast then I will make the oatmeal. Besides cereal he makes some kind of protein in the way of tinned fish or sausage, fresh fruit, and hot tea. Pretty healthy huh?

To get to the point, my offer to make him oatmeal (to be his cereal for the day,) totally got him off track. He lost all the details of what to do to make his breakfast. Forgot what to do before I made the cereal. Couldn't think about the protein, couldn't figure out the fresh fruit, put the box of tea back in the cabinet, and then stood there, confused.

I repeated, "Do everything you usually do for breakfast, but I'll do the cereal."

Blank.

I took him over to the cabinet where the pictured sign is posted that shows what he needs to do each day for breakfast.

Blank.

I said, "Tell you what. Forget what I said. Make your own breakfast." I put away all the makings for oatmeal. "I'm sorry I confused you. Make your own breakfast. I'll do oatmeal for both of us on another day."

"OK," he replied, "that would probably be better."

At this point in my writing I just asked him if he was back on track and he answered, "Yea."

Meanwhile I am amazed at what does (or doesn't) go on in his brain.

It Becomes Easier as it Becomes Harder

I may have written about this before but I think it is worth my working through again.

It seems that the more Alzheimer's takes away from Gregory the easier it is for me to cope. I become more aware that he is unable to deal with certain situations: language is usually a problem now so I get used to it, he is confused more often than not so confusion is expected, disruptions in his routine always affect his ability to function so I mobilize and help him through the change, when he begins to get frustrated his level of frustration escalates and causes his abilities to decline so I do not give him tasks that would frustrate him, he is able to help less so I do more.

Gregory continues to be happy, content, and to enjoy his life. The difficulties come when I can't cope, get frustrated or angry, loose my temper, get short with him, forget that he is not the person he used to be when we met thirty five years ago. And since I am more aware of his inabilities, I expect less, ask less, do more and feel better. Sounds strange doesn't it?

Not All of One Part: In Four Acts with One Intermission

This has been a new adventure. Suddenly items with more than one part are causing Gregory some confusion. I will have to keep an eye on this.

ACT ONE:
Scene One: Book Mark
Scene Two: Book

Last night as we were finishing up reading, Gregory seemed to be having some trouble with his plastic, clip type bookmark. He asked me if I had another one like it and I asked why. "This just doesn't seem to work," he replied. Then after looking at the bookmark, this way and that, he said, "This may seem foolish, but I do not know how to make this work."

I demonstrated, two times on my book but and he still didn't get it. Then he realized that the reason he didn't understand how to use the bookmark is that he had put his book away and the bookmark by itself didn't make sense. Once he had his book in hand again, he was on the track.

ACT TWO:
Scene One: Electric Kettle
Scene Two: Electric Kettle Base

This morning a similar event took place. He came into the bedroom where I was working on my computer and while he couldn't explain in detail, he said something was wrong in the kitchen. I followed him in and he pointed to the electric tea kettle and said, "It doesn't seem to be working. I have the water but."

He had filled the kettle with water but it wasn't heating up. The reason it wasn't heating up is that he had placed the kettle on the counter next to the base but not ON the base. Obvious to me but not to him. Once he realized that one needed the water in the kettle AND the kettle needed to be on the base to heat the water, he was back on track.

INTERMISSION:

You may have noticed that a lot of these recent BLOG entries have been describing new things that have been going wrong, misfiring, short circuiting, causing me anguish. I feel like I have been spending a lot of time detailing Gregory's progression (regression?) and that the BLOG may seem like so much complaining. But things seem to be progressing (regressing?) at a faster rate. Hopefully it will slow down after a while.

Certainly the BLOG is one way of my dealing with our life and also a way of sharing our life with people who care and need to know. Right now, however, I am not sure how helpful this is being to other people dealing with Alzheimer's and other dementias. Let me just say that perhaps my experiences will help if only to show you that you are not alone. Hang in there. It will get worse. You will get better at dealing with the details.

ACT THREE:
Scene One: Water
Scene Two: Glass

Just now Gregory is a little distracted because the plumber is working on the kitchen sink. He asked me, pointing to the bathroom, "Can I get water in here?"

"Yes," I replied. He stood in the bathroom doorway not knowing what to do. His hand kept taking the shape of holding a glass but he looked around getting more confused. He left the room and paused in the hallway.

"Do you need a glass?" I asked.

"Yes."

"Here use this one." He came back taking the glass I had on my desk which was half filled with water. He wanted to fill it with more water but already forgot that he could get water in the bathroom so he headed for the kitchen where the plumber was working. I called him back and said, "You can get water in there," pointing towards the bathroom.

"Right," he said. Once in the bathroom however he did not know how to 'get water." It took him a real conscientious effort, thinking out loud, and finally he figured it out saying, "Of course!"

ACT FOUR:
Scene One: Helping
Scene Two: Typing
Scene Three: Worrying

Meanwhile I am being distracted helping Gregory, typing this BLOG, and wondering how much this plumber visit is going to cost me. Life goes on.

CURTAIN

Reality Test

Most often I try to anticipate Gregory's needs, especially as his language and communication abilities continue to disintegrate. Most often I am able to figure out what he wants to say or tell me. As I have written before, its those times that I cannot anticipate or guess that make for difficult interactions and therefore are emotionally heavy situations for both Gregory and me.

Another area of difficulty is Gregory's ability to make connections and associations. I will ask him to get me a new kitchen towel and he will not recognize word "towel." This has been happening more and more as his grasp of the meaning of any particular word continues to fail.

For example, as he is trying to ask me about where his gloves are, he will wiggle his hands but when I ask, "Are you looking for your gloves?" he will reply, "No." Even though it is his gloves he is looking for. Is it the disconnect of the word "No" or the word "Gloves." Sometimes that is clear to me and other times it is not.

Most difficult of all is when I feel that I have to "wait it out" and not help at all. Sometimes I feel the need to do a reality test to see exactly how much Gregory is going to be able to do. Last night I asked him, as I usually do, to set the table for dinner. He got the place mats and napkins done but forgot the silverware. He moved on to fill the water glasses.

He usually stands in front of the open refrigerator thinking about "what's missing." Then he will realize and shut the refrigerator, go to the cabinet, get out two glasses, and put them on the counter. Sometimes I will just say the word "glasses" and he will click in and proceed.

This time he stood in front of the open refrigerator for a long time. He looked over at where the empty glasses usually sit while waiting to be filled but it didn't help this time. Then he closed the refrigerator and opened the freezer. He pulled out the ice drawer and scooped out a handful of ice, turned towards the usual "where the glasses are waiting place" and stood, confused, hands cold with ice, not knowing what to do.

He looked at me several times and I soothingly replied, "I'm just being patient." Sometimes I will say, "I am just giving you space." This is to let him know that I am not upset or angry that he is confused.

Next he returned the ice to the drawer, closed it, and closed the freezer. He turned to me and said, "OK I give." I went to the cabinet hand handed him two glasses. He successfully took over from there. But what an ordeal. And watching the look on his face as he becomes increasingly confused (sometimes embarrassed, sometimes angry, sometimes just confused) is very painful for me.

Reality checks are no fun for me to suffer quietly and probably not easy for Gregory, but they are necessary so I can keep tabs on what he can do and what he cannot do with greater or lesser frequency. When it looks like the skill is really gone, I will not ask him to help with the skill or I will give a lot more support up front. For example, I am about to start handing him two glasses every time I ask him to get our dinner waters. Soon I'll have to put out the place mats, napkins, and silverware and hope he can figure out where it goes. Time will AND DOES tell!

Write Don't Talk! Or At Least Speak Plainly and Simply

These are a few wonderful tips from an article in the Blue Cross Blue Shield newsletter. We rely on speech so strongly that when a person with Alzheimer's is unable to use language times get rough. A suggestions for people with advanced dementia is to write a simple, brief note using large letters to communicate. Have the person read the note and see the response.

Also creating a "Memory Book" with pictures of family helps to unlock stored memories that a person with Alzheimer's just can't get out in a chat. It's not that the person has forgotten, they just need help with remembering. Creating a book with commonly needed objects or activities is another way to communicate.

Neither of these techniques are necessary yet with us but they are good to keep in mind. With Gregory, I have found that simple sentences, spoken slowly (but not insultingly,) after I have Gregory's attention usually do the job. One or two ideas at a time is the most he can handle when I ask him to do something.

I have made signs to help him remember including: 1) by the table near the front door where we keep our pocket stuff - FOR YOUR POCKET - wallet, keys, cell phone, Chapstick, etc. 2) On a shelf in the closet by the front door is a list: COAT, SCARF, GLOVES, EARMUFFS? 3) On the inside of one of the kitchen cabinets is a sign with a column for each day of the week and pictures of what to have for breakfast on each day. This helps Gregory alternate cereals, sausage or fish, toast or muffin. Sometimes I will write a simple note on a POST-IT and hang it on his bathroom mirror, paste it to this bedside table, or stick it to his breakfast tray.

Today these techniques work, tomorrow they may not so we will develop new ones. One day at a time!!!

If I haven't already given you an idea...

If I haven't already given you an idea of what it is like to live with someone afflicted by Alzheimer's here is yet another story. (I'm being light with this opening. Don't take offense. It cheers me up and makes me feel like I am "joking" with you.)


After dinner I retired to my computer. Gregory was cleaning up, there wasn't much for him to do as I try to keep up with washing and putting things away as I go along in my cooking. He called me in a short while later saying, "Michael, something is wrong." I stopped what I was doing and went into the kitchen. I have learned not to get too excited or too upset until I know for sure that something IS wrong."

He had finished all the cleanup and was wiping down the sinks. One is a regular sink and the other is a smaller prep sink that houses the garbage disposal. Each drain in both of the sinks is covered with a stainless ringed, rubber holed basket that keeps the garbage from going down the regular drain and from going down the garbage disposal drain until you are ready.

Both sinks were fairly clean, the stainless baskets were on the counter to the left of the sinks. He pointed at the garbage disposal drain opening and said, "Something is wrong with this." I asked what he meant. "I don't know, something is wrong with this." I asked him to try to tell me what he thought the problem was as I didn't see anything wrong. He poked his finger at the disposal hole and said, "This." "This." "This. I am used to it up to here." and he placed his hand at sink level.

I took the stainless basket, put it in place over the drain and asked, "Does this look better."

"Yes, I am home now. Thanks."

So my thinking goes like this: Is this what he really meant? Did I help him figure out what was troubling him or did my inquiries only confuse him more? Is it because he did not see the stainless basket? Is it because the hole in the disposal is dark and he couldn't tell what was going on down there? Is it because he forgot what the stainless baskets are used for? Will he remember not to put his finger or hand into the disposal while it is running? Will he throw the baskets in the garbage like he has done previously? Will he know how to clean up after dinner tomorrow or will I step in to help. Should we do more things like this together so I can keep an eye out for problems? etc etc etc

To be continued... (I am sure.)