I talk therefore I am

Several months ago my husband would complain about a friend of his at adult day care, a former attorney, who used to talk for what seemed hours about his previous career. He had been involved in the civil rights movement integrating St. Louis schools, a proud moment in his life. Bob appreciates his contribution, but he would complain about how X talked and talked.
This morning, not for the first time, I found myself trying to do my breathing (one one thousand ... out, two one thousand ... in deeply now) while Bob talked; I timed him: 21 minutes without interruption or pause. He talked about whether Neal Diamond was from Carolina and about learning of a problem with bats in Missouri, on and on and on and on. He even now and then, when he couldn't think of a word or pronounce the word correctly, would say "I can't talk" in exasperation.
Talking about exasperation!! I found myself exploding inside. I listened to his stream of consciousness, rambling incoherent monologue. I couldn't help but think that in this way he stays in touch with some kind of thought. He clings to communicating and thinking.
When I consider his conversation from this angle, I hope to be more patient and to listen quietly.

An interesting Alzheimer's fact

We went to see the doctor a week ago and I finally remembered to ask him about temperature sensations in the Alzheimer's patient. Over the past few month my husband has been eternally cold. This was less a problem in September than it is in November. In a house where I will sleep practically naked, Bob is wearing flannel pajamas and has four blankets on top of him before he is warm enough.

When I'd mentioned this to my friends, women whose husbands also have AzD, they had all agreed they deal with the same issue.

Turns out that this is not uncommon. The doctor says that the difficulty may pass or ... linger. Whichever, try just to keep him comfortable -- thank God I'm through with hot flashes! He explained that the section of our brain that allows us to regulate bodily temperature runs right along the memory center, the hippocampus and others. Huh! http://www.dnrsystem.com/limbic.html

Taking an autumn walk

We have lived in this house, in this subdivision, which has but one entrance and is a single street with three branches leading to cul de sacs housing 40 families, for 25 years.
We have been the “walkers” in the neighborhood for 22 of those 25 years; once at a party when someone said, “Oh you’re the walkers,” I corrected them by saying, “No, we’re the Menchhofers.”

This is home. Today for the first time, Bob got lost.

A glorious autumn day, we went for a walk but called it quits after about 20 minutes. I have a bum knee, and the doctor said to let the pain tell me when to stop. After we got back and I settled on the couch with an ice pack, Bob decided he wanted to walk a bit more.

How long do you wait when you begin to feel nervous about a person with dementia going for a walk? Six out of 10 Alzheimer’s patients wander. He wasn’t “wandering;” he’d gone for a walk.

Ten minutes passed. He’d promised it would be a short one. Fifteen minutes. I decided if he wasn’t back by fifteen after the hour, I’d take a drive. Shortly afterwards the door bell rang; I could see Bob out on the porch; sometimes he has trouble figuring how to get inside, but I saw someone else at the door. John, a neighbor we don’t know except to exchange brief comments as he passes us, he’s a runner, had brought Bob home.

He introduced himself and gave me a firm handshake. He spoke pleasantly about the conversation they’d had and how it all worked out perfectly since he had needed to cool down and he and Bob walked home together; he was really telling me that he’d helped Bob find his way back.

Later I asked Bob if he’d gotten lost. He didn’t really answer. He did say that he was sort of looking around and then John started walking with him. He said that John immediately seemed to recognize that, with all the leaves falling, everything looked less familiar.

Bob is glad to have made a new friend.

Who would think...

taking two rolls of extra toilet paper to put on the back of the comode would be a big deal?
Being a caregiver for a person with AzD means that we always try to think of simple tasks which s/he can do and thus feel useful. Today I am getting ready for work and want to put extra TP in the bathroom off our bedroom.
First he looks at the rolls; he wonders what they are; he tries to figure out mentally where the "bathroom off our bedroom" is and then why I want this tp in there. "But... but .. I use this [hall] bathroom."
"I already put extra in there."
He pauses at the hall door and really wants to go inside with the two extras.
IS this worth it??? you have to wonder.
"I need extra here. I go in here."
"Let me take them. I can do it. Thanks, honey."
"No. Take them to the bedroom?"
"OK, yes."
A few minutes later I walk into the bedroom and he's standing there looking at the rolls and wondering what to do.
"Thanks for bringing them in here for me." I take them and put them on the back of the comode.
A few minutes ago I found him standing at the doorway to the hall bathroom. "So, there's no toilet paper in here now?"

Being Patient

Sunday 5:45a.m.
It’s the last weekend of summer and the windows are open; I’m in a light weight nightgown and perfectly comfortable.
“I’m fridging.”
“What?”
I’m fridging … er it’s ... cold in here. I’m … I’m…”
“Freezing?”
“Freezing. I’m freezing.”
As always when he gets out from under the covers, Bob reacts instantly to what he experiences. In the life of a person with Alz no later or before exist. Only now which is … you know, fridging.
I get up and give him the long sleeved blue shirt he’d worn around the house the day before.
“What’s this? I want the shirt I wore yesterday.”
“That’s it.”
“No, it’s not.”
“Ok, let’s just try this and see how it works.”
“No, I’ve never worn this one.”
Sigh. “Ok, let me get you a sweatshirt.”
“Good.”
I get one down from the closet.
“Thanks. I wore this all day yesterday.”
No, you didn’t. “I think you’ll be too hot shortly.”
“I won’t. This is perfect. It’s what I wanted.”
“Good. I’m glad.”
Not 10 minutes later we’re sitting in the living room and he starts fidgeting.
“Can I help with something?”
“This shirt is bothering me.”
“Oh?”
“Well, it’s too heavy and it scratches my neck.”
I do not say but you wore it yesterday.
“Want to change into something else?”
“Yes I do.” I’m kind of hot in this too.”
I hand him the long sleeved blue shirt he’d worn the day before.
“Perfect.”

Memory Walk

Bob with his favorite musician, Hudson of Hudson and the Hoo Doo Cats.

AzD causes a person to move back through the stages of life (like Benjamin Button) just we once moved forward.
Saturday we were at Forest Park here in St. Louis for the Alzheimer’s Association’s Annual Memory Walk -- always incredibly positive, with lots of good music, good people, and good cheer.
One of the musical features this year was an Alzheimer's sufferers group that Bob performs in called the Alzchimers; they mix drums and chimes and song and are taught and directed by a music therapist. Even though Bob has to be helped into his chair like the functionally blind man he is, give him that drum and he is a happy guy. Because Bob gives himself over with such gusto to the music, the group’s director always wants him to have the microphone. Saturday was no different and he sang out with joy, no restraints. When he didn’t remember the words, he was like a jazz man! It was truly beautiful to see.
After the group’s performance and a few formalities, it was time to kick off the walk. Traditionally this is done with the song “We Are Family.” Bob couldn’t restrain himself. Standing there next to the bandstand, he just started dancing, dancing all by himself.
To be able to throw yourself into the moment and the music! He was a picture of sheer delight.

That explosion!

Life has not been smooth lately. It's always sad to realize that even I have fallen into the easy streets of Denial, thinking we could move along as we were and adjust to a three way relationship: me, Bob and AzD.
Since the hallucinations started, I've realized how much Bob imagines a life. He thinks he actually saw our granddaughter-to-be just from our daughter's description of her 20 week scan. Now that's good. When the eyes are bad, a great imagination is really helpful.
However, the other day he stood at the sliding glass door trying to show me the man standing on our deck. I suggested that he was seeing a reflection of himself or the neighbors moving around in their yard. Quietly he said, "I guess I must be seeing things." Such self awareness is devastating.
Bob takes Axona every day, a powdered medical food that I mix in water; I don't think it's helping him. Yesterday he commented how tired he was of drinking it. I asked if he wanted to stop taking it. He said no. I asked if he'd like me to add some fruit and blend it up like a smoothie. He thought that was a great idea.
Innocently this morning when it was time for the Axona, I went to work in the kitchen, telling him that it would be ready in a few minutes. A bit later, he stepped to the doorway just as I hit the button on the blender. He disappeared like a startled cat.
Then when the smoothie was waiting for him and he'd not come in to the kitchen despite my calling several times, I went in search. I found him, as he still is, lying on the bed. I asked if he was ok. He said, "No. I'm in pain." What? "That explosion!!"
He said his ears were ringing; he just couldn't take all that noise. He couldn't imagine what I'd been doing.
I said it was the blender.
He said it was an explosion. It was like a war.
I left him lying on the bed while his ears recover.

Around in Circles

Yesterday Bob went out to walk in the back yard and see if he could "see" our music loving neighbors. I watched as he strolled along the edge of the deck, looking toward their house often and sometimes standing and peering through the trees. It was rather poignant. Then he seemed to stop looking and just made a loop of the house.
However, when he came inside, he commented: "I don't know what's up with them. They didn't say a thing."
I asked, "Did you talk to them?"
Bob, "I tried but they didn't answer."

Singing with Roy

My husband loves nothing so much as music. I believe he could be locked in a padded room with great music playing and be happy to the end of his days.

We’ve recently “learned” that our neighbors apparently like music too. I always play a CD while Bob eats breakfast; early this week he was in the kitchen groovin’ with The Greatest Hits of Roy Orbison. He came upstairs and told me, in a quiet voice (so they wouldn’t hear him), that the woman who lives behind us had brought “a whole bunch of children” and they were in our yard smiling at him as he stood at the sliding glass door singing. Unfortunately, I was too slow on the up-take and expressed my doubt. The day deteriorated because of my disbelief.

The next day he came and got me so I too could see the “maybe as many as 30” people who were out there still smiling with the music. We have a wooded back yard. I looked out. Trees. Greenery. Vaguely, as always, I could see the neighbor’s house. This time I was prepared: “It’s so good they’re smiling,” I said jovially. Bob was happy and nodded in time to Roy.

This morning as we sat on our front porch drinking coffee and enjoying the day, Bob looked down at our river rock and chuckled. “This dementia is so weird. It looks to me like the rocks are smiling.” We laughed, commenting on their good nature. As we got up to go inside, Bob jokingly leaned down to the rocks and said, “It’s ok, guys. At least I know you’re alive.”

Later in the kitchen, I asked, “You know how you were joking about the rocks off the front porch? Do you think that could be what’s happening here in the back yard with the people and the music?”


He glared at me from the doorway, said nothing, and left.

Summer 2009

Just to say that during this summer of 2009, we beat the disease at least for a few months. Vacations (apart) were terrific and restful for me; time together was laugh filled and stress free. Of course, as all of us know, summer vacation always ends.
Carpe diem!!

Questions I answer over and over again

What was that?
Where are you?
Are you all right?
Did you put yogurt on my cereal?
Did you put milk?
Where’s Ravi (one of our cats)?
What was that?
Is that Ravi or Scarlett (the other cat)?
Are you all right?
Where’s my spoon?
What does my t-shirt say?
When is the Memory Walk?
Where are you?
Have I taken my pills yet?
What are we doing?
What was that? Where are you? What was that? Where are you? What was that? Where are you? What was that? Where are you? What was that? Where are you? What was that? Where are you? What was that? Where are you? What was that? Where are you? What was that? Where are you?
Where
Are
you?
?
?
?

Losing words

Strange how it happens and we adjust. I understand now how people with dementia eventually lose the ability to communicate.

For a long time, when Bob looks for the remote control for the radio (he's quite an NPR addict :), he asks, "Where is the radio?" I can't correct him or get him to use the right word so ... if "radio" works, then radio it is.

This morning I realized that a new word change had occurred. After we'd taken a walk, done some yard work, and gone inside, I asked him if he wanted to shave. He looked at me quizzically. I repeated thinking he'd not heard.
He had heard; he repeated the word "shave" curiously. Finally I said, using hand gestures, "You know, where you use the razor on your cheeks?"
He smiled widely, "Oh, you mean 'do I want to scrape?' That's what it's called: scraping."
Ok with me, I will try to remember that new word next time.

"A rose by any other name would smell as sweet."

Rest for the wicked

I just spent a week in London with my two daughters, Kelly (lives in Edinburgh) and Amy (lives in Madrid), while Bob spent the week at his brother's house on the Chesapeake Bay.

Having had a week’s break from caregiving, I find it hard to put my feelings into words. Bob had two brothers, a sister, and two in-laws to help him out. He did well, although he got quite tired from all the talking and finally gave in and took naps.

This is reassuring to me as it’s easy for a caregiver to fall into that “there’s nobody but me …” way of thinking. Just to be sure all would go smoothly, I had written and sent the Bob Instruction Booklet, which, of course, the brothers barely looked at, although his sister read carefully:)

Getting away was invigorating while I was away. We spent our time shopping and seeing plays -- without male restlessness or sighing. As we navigated the crowded streets, Kelly would say, “Mom, relax; I’m not dad.” I had trouble giving up my habit of checking over my shoulder every five seconds. Finally they put me at the end of the line and all was well.

I had hoped that the R&R would linger in my soul, but it really hasn’t. I try telling myself that this is something we can do next year as well, but I am haunted by the “progressively deteriorating” aspect of the disease, and I find myself not really believing. I want to start that week over again.

I need to put all of that behind me and enjoy the memories and remember the laughter. Here and now – that’s what we have.

It's really difficult to live my life and not the disease, especially during the lazy days of summer when time hangs heavy. I guess I should go clean out a closet or two.

My grandmother would be proud of me. Thank heavens for families.

Friendships

Thursday night Bob and other former Think Tank Player members (this was an adult education class for folks with early AzD -- from about two years ago) were asked to sing their favorite song, Hello My Friends, at the opening of a local Caregiver Conference.
Of course, Bob never misses a chance to sing and wanted to go. I ended up also taking his closest friend, Dr. Joe, a former plastic surgeon, as Joe's wife has some stressful family stuff going on and couldn't transport him.
We picked Joe up and the two of them practiced their song all the way to our destination.
They had reserved front row seats for the six singers (and their caregivers). To get a better view I moved to the next row and sat directly behind Bob and Joe.
The performance was greeted by a standing ovation; the guys were all so obviously delighted to perform again. They belted it out and waved to the audience. Afterwards we stayed for about 45 minutes to watch the improvisational theatre group's skits about caregiving problems.
It was heart warming to watch Bob and Joe next to each other, being sure to stay together, holding on to each other, and whispering and laughing (only politely, of course) during the event.
Our doctor has stressed the importance of social contacts. The local AzD Association has created opportunities for people with dementia to bond. It is one of the really good results from this terrible disease.
Another is that when they "lose" a friend (two of their close group have already been placed in nursing homes), eventually they forget.

1000 words

The Struggle to Communicate

Many of my entries are in dialog form because that’s where the essence of the disease and the losses show up. When my fellow caregivers read some of these, they howl in recognition and in shared frustration.
Today:
Me: The squirrels knocked the lid off the the bird feeder, that green metal top.
Him: Where?
Me: The feeder outside the office window.
Him: Where?
Me: The window next to where I sit at the computer.
Him: What?
(This is exactly word for word written down dialog, mind you.)
Me: I think I should go outside and find the top.
Him: To what?
Me: The birdfeeder.
Him: Where?
Me: Could you take the birdfeeder down?
Him: I’ve done it for years and years. Show it to me.
Me: Okey dokey.
Him: Here’s the problem. These papers are on the table.
Me: (Moving them) I think it’s fine now.
Him: I’ve done this for weeks and weeks. The problem is you pile stuff up there. That’s why the top wasn’t on right.
Me: Ok. Can I help?
Him: No. I’ve done this for years and years.
Struggling to reach out the window to the feeder (remember his brain won't let this man see so everything he does is a true adventure), he says: This table wasn’t here before. That’s the problem.
Me: The (wooden library) table has been there for years and years.
Him: It has?

The Descent into Hell (probably not yet)

I’ve resisted for a long time putting Bob onto any anti-depressants (our doctor recently suggested he thought it was time) even though I’ve been on the lowest dose of Prozac since my gyno treated me for hot flashes and then, after the diagnosis of AzD, we decided I should stay on it.
I tried going off last summer, thinking I didn’t need it. Within a week I was short tempered, irritable and rushed; you can only imagine the kind of reaction that provoked in dh.
The one steadfast rule of Alzheimer’s is that the emotion you project is the one you get back. Maybe that fact is why I’ve started watching the Dog Whisperer -- to get some training.
Of late, Bob’s been a bit depressed, definitely more frustrated, and irritable. He gets angry at me. He doesn’t hear well, asks me to repeat, and when I do so with a raised voice, he puts his fingers in his ears.

Today in complete frustration, I slammed the front door after he’d stepped out on the porch. Despite the fact that the storm door was closed between us, he decided that I slammed on purpose with the intent of damaging his hearing.

Remember: logic has no place in this world.

Eventually, I went off and walked on my own. When I returned, we tried to wrestle through this, but he felt hated and wronged.

The most horrible thing about this disease is that the caregiver really does have it too. S/he doesn’t get the same compassion or understanding. For sure her “patient” never understands the depths and lengths of emotional control and personal loss required and experienced.

Today Bob told me that he has been naïve and he now accepts the general view among his group of men friends about their caregiver wives: “They’re trying to have some little fun thing. They’ve got the power.” An exact quote: I wrote it down the minute after he said it.

What an incredibly cruel disease. Either I need more drugs or he does.

Chinese Fire Drill*

(Is the title PC?)
I backed the car out, loaded my stuff, and opened his door (passenger’s side) so he could hop in and we could drive away. He walked around the rear of the car, looked about, reached for the handle of the back door.

Me: Nope. Move forward a bit. The door is standing open.
He steps back and walks toward the trunk.
Me: Wait. Come on back along the side of the car. The door is open.

He walks along the side of the car and then around the open door, bumping into wet tree branches on the way. He crosses in front of the car and arrives at my (the driver’s side) door. He doesn’t know where to go.

I get out and walk him around to the open door.

*A Chinese Fire Drill is a pejorative expression usually referring to a prank, or perhaps an expression of high spirits, that was popular in the United States during the 1960s. It is performed when a car is stopped at a traffic light, at which point all of the car's occupants get out, run around the car, and return to the car (not necessarily their original seat). Chinese fire drills are sometimes executed when one needs to get something from the trunk of a car. Occasionally, if one of the participants is late to get inside the car, the others might drive off without him or her. Thus the expression "Chinese Fire Drill" is the act of a group of individuals accomplishing nothing. (http://en.wikipedia.org/wiki/Chinese_fire_drill)

A little help

The only way to survive Alzheimer’s is by reaching out. I can’t imagine those people who huddle at home, hide the disease, and die in fear. This applies to both the sufferer and the caregiver as AzD really is a disease that strikes more than the one who gets the official diagnosis.

The caregiver dies inside little by little too. I know that. I see it happening to me. I know how difficult it is to keep wearing the brave happy face. My husband’s doctor has stressed how important it is to maintain social contacts. For me friends and colleagues are life itself.

I retired last year from teaching because Bob required more of my time, patience, and energy. I am blessed to have been able to continue part time. (Sometimes I question my sanity as I do 75% of what I did before but get 42% of the pay. Funny thing is I love it!) My job and my contacts at school are my sanity.

I am certain that teachers are indeed the very best people in the world. I live that reality every day. My stories are not often upbeat, but at lunch someone always asks. At the end of the day, somebody is bound to stick a head into my classroom to check on me. The number of shoulders inviting me to rest humbles me. And these aren’t long time friends. Most of my closest folks retired ahead of me. These are younger people who are at the beginning of their lives, families, and careers. They are often my daughters’ ages. Yet they reach out and I am strengthened by them.

Like all good teachers, they also invite me to be better than I truly am. Their support and expectations leave me determined to be what they imagine me to be.

I do get by with a lotta help from my friends.

Damned if you do ...

damned if you don't.

In caring for a person with Alzheiemers, the suggestion is that you give him the word he seeks or go along with his "adjusted language." In keeping with this advice, when Bob started calling the radio's remote control the "radio," I went along with that.

Today he was really frustrated when I told him we kept his (new birthday gift from the girls) iPod between the speaker and the radio. I went in to the bedroom to help out and found him holding the remote control and looking all about the room; he had NO idea about the speaker but he did have the "radio" in hand.

Happy 65th birthday, Bob

So today I dedicate myself to being only positive and pleasant, never getting impatient or trying to hurry Bob. That is my gift to him. Sound easy?

His sister in California sent him a “party in a bag” which consisted of a huge plastic bag filled with ribbons and confetti, party plates and napkins, and silly small gifts. I suggested he begin the day by opening this. A package wrapped in tissue paper took almost 20 minutes to open as he struggled not to tear the paper. In between attempts to open it, he talked with the cat. “How are you today, Ravi?” Pull at the paper. “Ravi, I love when you smile at me like that.” [Ravi was looking out the window.] “What do you think is inside this?”

[This is such a lesson in patience for me.]

Deeper into the package. It took a while to figure out what the miniature water guns were and then what they are for; I’m happy to say that Ann sent two. Two party blowers totally confused him. He blew and the “end” popped out; he was startled, but he was certain they should make noise. “Isn’t this fun, Ravi?” Finally, he tried to come up with a name for them; he wasn’t quite satisfied with party blowers but neither of us could be more creative.

A small wrapped box provided endless entertainment. He held it by the ribbon and spun it around in the sunlight. Like a small child, he was delighted by the way it sparkles. I had to remind him that there was something inside.
Happy Birthday, Bob.

A Matter of Perspective

We have two cats; I won’t say they’re "ours" but we adopted them when my daughter and her husband moved to Scotland. It’s been a wonderful experience, and Bob absolutely adores them, dotes on them, obsesses on their health and well-being. I mean he really obsesses. Apparently that’s not uncommon with people who have dementia. Animals are such delightfully non-judgemental creatures after all. They could care less if he forgets a word as long as he pets them and doesn't forget their food – which I am ever present to remind him about.

Ravi, the orange tabby, likes to battle the bed covers when they’re not nicely made up and in the last couple of days he got me as he attacked and I could tell that it was time for a nail clipping.

This morning I hoisted him into my lap and set to work; he’s fairly good but he doesn’t like it and today he decided to attack my hand and the clippers. He’s growling and snapping; I clip and then “youch!”

Bob: “Oh poor Ravi, it’s all right. You’ll be fine. It’s almost over.”
Me: “Bob, he’s just fine! I’m dripping blood.”
Bob: “Oh good, he sounded like you were hurting him.”

A cold, snowy, not-April-like Monday

For several weeks now as we drive into work and daycare in the morning, we haven't been listening to anything but music. Today I thought we should get back into our daily intellectual-rigor assignment so I put on CD#5 from the Anticancer book; we listen and then talk about what we understand and think.

It didn't take long for me to realize that Bob was paying attention to everything but our book. Geeze! I mean this is just part of the doctor's orders! I stopped the CD a couple of times to help him refocus.

I felt myself growing increasingly tense and irritated. I felt myself blaming him for not trying. I didn't say anything out loud, but I heard my curtness. Surely he could. Funny thing is that the narrator was talking about stress and negative attitudes creating fertile soil for the seeds of disease to grow and develop. Damn it!
Bob should listen to this!! If he would just try ...

We pulled up in front of the Family Center, and he struggled to gather his things; "Be careful, sweetie," he said as he got out of the car. He always worries about me.


Only now, as I sit here in Walgreen's parking lot writing this, distressed at my own impatience and annoyance, do I look up and see that he was distracted by the snow, the beauty of the big white flakes falling silently onto a spring budded world.
I had been driving and doing business; he had been looking and experiencing the day. I had closed my eyes to one big D, Distraction, in the form of beauty and peace.

And a child shall lead them ...

In, beside, over, between, above

Prepositions are little words that, the English teacher in me says, show relationships between nouns. A person with AzD loses the knowledge of what these tiny words mean, not to mention the meaning of tons of other words as well. An example:

Me: Tomorrow is trash day; will you take the big garbage can that is sitting outside the garage up to the road?
DH: What?
Me: The big can is sitting on the driveway. Please drag it to the road.
DH: It's in the garage.
Me: No, I took it out and put it on the driveway so you could find it.
DH: There are two cans in the garage.
Me: You are right USUALLY. However one is outside the garage now.
DH: Do you want both cans on the road?
Me: Just the one outside the garage.
DH: Where is it?
Me: ON the driveway.
DH: In the garage?
Me: Never mind, honey, I'll take care of it.
DH: Two cans are in the garage. We always have two cans.
ME: It's ok.
DH: What do you want me to do with the cans in the garage?
Me: Nothing, but the one on the driveway wants to be up by the road.
DH: It does?
Me: Yup.
DH: There's a trash can on the garage?
Me: I'm going to go inside now.

It's my birthday; I have orange juice and champaign. I think I'll have a mimosa:)

An interesting Alzheimer's symptom

No, it's not a craving for Lebanese food, although ... I may have that after Tuesday evening up in D.C. Bob's brother Doug and his family picked us up at the hotel and we walked over to this wonderful restaurant. No recession problems there: it was packed and full of chatter and laughter. Maybe a bit too much for Bob who was pretty exhausted from the day but who held up amazingly well through the entire three days -- every bit as well as I did:)
After a glass of wine, he was even more tired and it was a difficult moment when he tried to speak to his nephew Alex but had no idea exactly where Alex was and he directed the question to Isabel, his sister in law.
This condition is called agnosia, from Latin meaning "to not know." This exhibits itself in Bob's loss of the ability to recognize things or people, not because he has forgotten them or because his eyes are not working (those have been well checked), but because the brain is not able to put together the information properly. I think agnosia causes many, many of the issues Bob struggles with; he can not easily sit down to eat a meal as he can't "find" his fork or an item on his plate. He can't "find" his shoes. It is not that he doesn't remember what they are; he can not "see" them. This is also why when his sister Carolyn arrived at his day care center, Bob could not immediately greet her; he needed her voice so he knew who she was.
Such a strange disease and how amazing is the brain.

The assault on the Hill

How invigorating to be an advocate and go from office to office meeting with public officials who have the power to really make a difference.
Alzheimer's is the 6th leading cause of death in the US.
How humbling to realize that most of their days are spent meeting with folks just like us with (almost) equally worthy causes.
It is currently estimated that people over 65 years of age have a 10% chance of developing Alzheimer's, while those over 85 have a 50% likelihood of developing AD.
The Missouri delegation, all 24 of us, outside Senator Claire McCaskill's office, our first appointment.

We were asking for three things: money, a government office, and a change in the two year Medicare waiting period for people disabled by the disease before they are 65.

We want $250 million more for the next two years to bring the annual federal total commitment to Alzheimer's research to $1 billion. Without a cure and with the aging of the baby boomer generation, this disease will cripple our nation's health care system.
By comparison the National Cancer Institute receives over $4 billion annually. We want Alzheimer's survivors too.

A fun moment: one of Claire's staffers came out to take this pic and then another arrived and offered to help. I looked at her, looked again; she was looking at me.
"Were you my student?"
"Menchhofer?"
Yup, I taught her in 2001 in Honors Soph English.

Healthcare News: 20/03/2009 There is renewed hope of finding a drug to treat Alzheimer's disease as scientists say they are closer than ever to a discovery.

Preparing to be Advocates

Alzheimer's Association Public Policy Forum, Washington D.C.
Day One, Monday, March 23, the Candlelight Vigil at the Lincoln Memorial

In the past few years, I've hardened myself against pity; I refuse to fear the future. I live the cliche: one day at a time, this moment now, but Monday night I found myself crying as I listened to the stories of three caregivers, heard of their losses, felt pain in the deepest core of my being.
For every diagnosed sufferer of Alzheimer's, countless others share the disease.
5.3 million people have Alzheimer's
9.9 million people are unpaid caregivers

I watched the flickering candles next to the reflecting pool and thought of the shared suffering. At the foot of the Lincoln Memorial I thought of that President's grief and losses and of the hope and strength he continues to give this nation. I thought of Mary Todd and the caregiver she tried to be and the men who kept her from her dying husband's bedside.

Without pain we have nothing to overcome, no weights to lift and pump iron into our veins. Standing together in solidarity Monday night, I may have cried but I did not feel alone.

Day Two, Tuesday, March 24, Training to be advocates
All day in meetings being poured full of information as we prepare for our assault on the Hill. Over lunch we watched previews for the upcoming HBO special, The Alzheimer's Project. The most horrifying moment of my D.C. experience was a minute or less from those previews.

How do you describe the complete loss of self? A picture is worth a 1000 words. One man and his wife -- maybe 8 shots or 9 -- as she left him. I don't mean as she physically died; I mean as she ... left him the way Alzheimer's makes a person go away. Her face lost its musculature; she developed jowls; all of her sagged. I could only see her folding inward, the going away, the being lost but not even having an awareness of loss.

I'm pretty sure I can't watch the entire four hours of the show, and I'm fairly certain that I will. I do not want Bob to see it: he is an innocent child, without awareness of where he's heading on this trip. It's better to enjoy the journey and not focus on the destination.

A new case every 70 seconds

On a positive note for Tuesday, I want to remind us all that Bob is a happy camper; at times I even think he seems better, but that too is a feature of the disease.
Not everyone is as lucky as Bob in attitude. Tuesday we met a woman who is just two months older than he and is awaiting her official Alzheimer's Disease diagnosis. They, she and her daughter/caregiver, had to wait until she turned 65 and had Medicare to afford the doctor's visits and the medical tests. But, they know. Let's call this woman Sue; her mother died of Alzheimer's, so did her grandmother. What must her daughter think? No wonder they went to Washington to advocate.
Sue isn't as lucky as Bob since she has no support groups where she lives. Her daughter is busy raising two small kids and does the best she can but is clearly between a rock and a hard place. Sue's friends all turned away. She lit up and grabbed Bob's hand when she learned what they shared. It was as if she'd found a long lost friend, one who would understand her better than anybody else.
Eventually the disease will make her forget the friends she's lost; for now she is alone with her memories and her emptiness.

Caregiver Musings

Falling from your lap,
photos unPolaroid
as you watch them flicker.
(Life is but a casting off.)
I grasp for the purple scarf
lost in the slightest breeze;
you giggle as it flutters,
then you forget.
Straight jacketed in cobwebs,
I crave your disease.

The Audacity of Hope

So we're going to a new doctor. Bob's been to our internist, a psychologist, and two neurologists; the experience with each was to "test" a bit, hand over a prescription, and dismiss us for another six months.
We're now seeing a geriatric psychiatrist. He is Indian and his early training was at the University of Bombay; he believes in the power of lifestyle and diet to bring about change. We're eating better and differently; Bob's still on the same meds, but we exercise like it's a prescription (it is), we drink green tea and I use turmeric in my cooking.
Bob is excited and hopeful. I feel like we're finally doing something; whether or not we'll succeed against Alzheimer's remains to be seen, but we have taken back some power.
Still when I hear Bob talk to people and repeatedly tell them, with great excitement, that he's no worse than he was when first diagnosed, I am saddened.
My "let's get it right" brain screams out to correct him, but, of course,
I don't. Ahh, the audacity of hope.

Why we can't fly to Utah this summer

Mom, me, Bob, Tyler (my nephew), Pat (my sister) hiking summer of 2007

My youngest sister lives in Park City and every summer my parents spend a month out there in a rented condo. My middle sister is flying to Utah for a week the end of July. In the past we've flown out and spent a long weekend with the family. Apparently this year just isn't good for that.
Here's Bob's current reasoning:
1. We're pushing our luck with all these plane trips we're taking.
2. Too many children fly on the plane to Tampa (seriously, that's a reason)
3. Those were nice planes we flew on to Salt Lake before, but they won't be the same this time.
4. I don't care if we're still flying Delta like before.
5. It doesn't seem wise, does it?

I ask you, does it?

Yikes! He's stealing MY memories

Many, many years ago, let's say in 1965, a very good friend, Chuck, and I went into Chicago with his brother and wife and a couple of their older friends. We were so risque! We went to the original Playboy Club. Hugh Hefner was there. We had dinner and the boys went sort of gaga over the girls' hanging out of those traditional bunny outfits. The girls/servers were really nice and friendly and a good time and good meal was had by all.
I'd actually forgotten pretty much about this event until this morning as we watched CBS' Sunday Morning and the piece about Christi Hefner leaving the company. Then Bob started recalling "our" visit to the Playboy Club.
I have known him for ALL of the time he's been even near Chicago. He's never been to the club; certainly we've never been. Still, I finally had to shut up as he recounted his memory of dinner with Hef.
It is painful to bite on your tongue!

Communication

Yesterday morning dh was trying to get dressed; I'd laid his clothes out on the bed as usual. I walked into the room and he was rummaging about -- clearly distraught and looking for something.
"Can I help?"
"I can't find, I can't find ... my ... dirty things."
"Huh?"
"You know! My dirty things."
I'm not sure how I figured this one out, but he was looking for his underwear and let me assure all of us that it was clean :)

The day before he got a bit upset with me because I was giving him way too many oranges. "I mean, I'm only supposed to eat ONE!" He held one slice of orange in his hand and emphasized his point with it. Of course, he was considering each slice of one small clementine an entire orange.
Language can be so sticky!

A new caregiver

This morning as I was trying to help Bob get his socks on, Mickey Mouse socks no less, his toenails were too long and I snagged one, hurt him, and he yelped like a bear in pain.
What annoys me at these times is that his reaction is always as if I intentionally hurt him. Then he needs long lectures (which I can NOT interrupt) to explain what happened, as if I didn't know.
Today in his annoyance with my complete withdrawal, he asked me totally calmly, "I don't want to hurt your feelings, but wouldn't you be happier if we found someone else to take care of me and you went on your way?"
Could we have bets on my reply? Actually, I asked him who he would suggest.
He's currently sitting there; I suspect he's considering an answer.
This isn't just for laughs.