The Alzheimer's Digest: Memory Loss

Showing posts with label Memory Loss. Show all posts

Thursday, January 2, 2014

The Alzheimer's Mind

A retired physician and accomplished author, Dr. Hilfiker was diagnosed in 2012 with a progressive mild cognitive impairment, which he says is almost certainly Alzheimer’s disease. His voice offers a profound perspective that will help caregivers to better understand what it’s like from inside the diseased mind.

I'm curious about what will happen to my state of consciousness as I enter more deeply into this disease.

At present that consciousness feels no different from any other time in my life. Toward the end, however, I'll be lying in a bed apparently unconscious.

But will I be unconscious?

If I am conscious then, what is that experience?
If I'm not conscious then, what are the gradual changes in consciousness that will happen between now and then?

On the Saturday before the Oscars, Marja and I went downtown for a showing of the five films that were nominated as the best "short films." A French film, Henry, made a deep impression on me.
From the beginning, the film felt confused, almost surreal. It flipped back and forth in time and was full of strangers who kept acting as if they knew Henry, the main character. But they kidnapped him, forcibly injected him with drugs, and kept him helpless in restraints. He met earlier versions of himself and of his wife.

It was all very bizarre until, over half-way through the film, I finally tumbled to the fact that Henry was demented, and the film was showing his world from his point of view, his own experience of the world. Mostly he was in his own demented world, but his sense of himself didn't seem to change as he passed back and forth. As far as Henry could tell, he was the same person whichever state he was in. Of course, this was only a film, and Henry's sense of himself was only fiction.

But how does the inner state actually change as this disease progresses?

An older friend once told me of an event shortly before her husband died with Alzheimer's. He had been completely out of it and intellectually unresponsive for a long time.

My friend visited her husband at the nursing home and, during the middle of her visit, his dull eyes seemed unexpectedly to find their focus, and he began a normal conversation that lasted some minutes. He seemed lucid, and in those few moments they re-kindled their emotional bond. He was cognitively present to her.

What happened?

Presumably we'll someday be able to describe physically what happens in the brain to bring about such wild swings. But what was his experience? Was he conscious of himself during their conversation? Was he in some way conscious of himself when he was out of it? What changed as he went into his wife's world and then out of it again?

In Henry's fiction world there was no real change in his sense of consciousness as he moved between the two worlds. Is that what happens?

Several people have said that emotional presence is one of the last lights to go out as Alzheimer's progresses. The experience of the staff at Joseph's House is that there moments when Joy, the woman afflicted with Alzheimer's ("Grace and Joy") is still sometimes emotionally present. What is her experience in those moments?

How little we know about this disease. Fifty percent of people 85 and older have Alzheimer's. yet we know almost nothing about what the experience is like.

I was surprised that the movie didn't frighten me. Henry's experiences seemed mostly "interesting."
But it did help me to realize how little I know of what's coming, how naïve this blog may later seem. And Henry's experiences and those of his care givers—along with the questions that the film raised in me—strengthened my determination to bring a bit more light to this disease.

Dementia Signage for the Home
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$8.00 - Routine Activity Checklist Template Cards

see on 2 styles

$8.75 - Memory Ring/Keychain (Pink)

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$34.95 - Doctor's Appointment Reminder Dry Erase Board

$8.75 - Memory Ring/Keychain (Blue)

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$8.75 - Memory Ring/Keychain (Red)

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$14.95 - Doctor's Appointment Reminder Notes Notepad

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$10.95 - Calendar Appointment Reminder Stickers (White)

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$10.95 - Prescription Bottle Refill Date Stickers

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$37.95 - Reminders Dry Erase Board

$14.95 - Note-is-Me Bold Yellow Notepad

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$14.95 - Note-is-Me Notes Bright Green Notepads

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$15.95 - Phone Message Notepad

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$28.95 - Weekly To Do List Notepad

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$14.95 - Medication Reminder Notes Notepads

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$14.95 - Do Not Call Reminder Notes Note Pads

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$14.95 - Visitor Reminder Notes Notepads

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$14.95 - Ride Reminder Notes Memo Pad

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$37.95 - Phone List Wall Decal

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$14.95 - Appointment Reminder Notepad

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$14.95 - Appointment Reminder Notepad - Light Blue

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$14.95 - Appointment Reminder Notepad - Bright Pink

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$14.95 - Appointment Reminder Notepad -Bright Yellow

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$14.95 - Lunch Time Reminder Notes for People with Alzheime Notepads

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$14.95 - Medication Refill Reminder Notepad - Light Blue

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Tuesday, December 24, 2013

The Challenges of IKEA

Guest Post By David Hilfiker

I recently visited my son Kai in Seattle. He's a carpenter and currently building a basement apartment in his house. While I've been here, we've been installing kitchen cabinets together.

IKEA cabinets are, apparently, of good quality and relatively inexpensive … but you have to assemble and install them yourself.

IKEA sells internationally and has chosen to obviate the need for translation by creating assembly instructions comprising only pictures and diagrams, no words at all. The instructions are very clever, walking you through complicated procedures one small step at a time.

They are thorough and accurate, but they are not simple.

Since Kai's the carpenter and it's his kitchen, I've been the assistant, deferring to him in interpreting the diagrams. Yesterday, however, Kai asked me to attach a cabinet door. The assembly was a little different from the others we'd done, but not particularly complicated.

On my own, however, I was completely flummoxed.

The two of us had previously put one small part of the drawer together, but I couldn't even find the place in the instructions where we'd stopped. I looked for ten or fifteen minutes and just couldn't figure out where to begin. I told Kai, he took over, and we got the job done.

Afterwards, we watched football together, went for a long walk and picked up a pizza. On the way home, I asked him whether he had noticed any impairment in my cognitive capacities, anything other than my reports of what I was experiencing. He pointed to the difficulties with the IKEA diagrams. He told me that that's the kind of thing you used to do better than I could.

He's right. That kind of capacity to translate diagrams and interpret the proper sequence of steps to complete that task had always been a strength. I'd enjoyed similar tasks and would have looked forward to it as a challenge, knowing that if I took my time, I'd get it done.

But that's changed.

Kai and I talked about it later, and he asked if such impairment is frustrating for me. I would have thought so, too, but, in fact, it hardly bothers me at all.

I'm cognitively impaired, I understand I'll be increasingly limited and, importantly for me, that I am not to blame, so it's been easy to let it go. I remain surprised by such equanimity, which had previously not been my forte, to put it mildly.

I'm very grateful.

In diagnosing cognitive impairment, there are several different domains. Most common in Alzheimer's is problems with memory, the so-called "amnestic" type. Non-amnestic symptoms include limited abilities to make sound decisions, judge the time or sequence of steps needed to complete a complex task, interact socially, or translate visual cues. In addition to a dominant impairment in memory, a second, lesser impairment in another of these domains is additional evidence for Alzheimer's.

What surprises me is how symptoms can be so specific.

Despite my inability to assemble the door to the cabinet, I was able to analyze several single-step problems that initially confused even Kai. Also surprising is how sporadic symptoms can be.

On another day, I could probably have gotten the cabinet door assembled.

Dementia Signage for the Home

Doctor's Appointment Reminder Notes Notepad

Doctor's Appointment Reminder Notepad

Red Prescription Bottle Refill Date Sticker

Appointment Reminder Notepad - Red w/Black Text

Medication Reminder Notepad

Red Toiletry Labels for Men Bumper Stickers

Medication Reminder Notepad

Medication Log Notepad (Sky Blue)

Medication Refill Reminder Notepad - Light Blue

Certificate of Health Notepad (Canary Yellow)

Certify of Professional Care Notepad (Pink)

Manual Prescription Notepads

Monday, December 23, 2013

Tips for Enjoying the Holidays Despite Memory Loss

The holidays can be a busy time of year for all of us, and the stress is magnified for dementia caregivers. Despite all the hustle and bustle, you can enjoy good holiday moments with a person with dementia -- it just takes a bit of thoughtfulness and patience. Here are some easy ideas for joyful times you can cherish together during this holiday season:

Share a favorite holiday dish or dessert together, at a separate time and place from the main meal. Take a quiet moment simply to enjoy and reminisce about the memories the tastes conjure up.
Listen to or sing a favorite holiday song together. Music can still elicit responses from those in the late stages of dementia, even when the person is no longer talking.
Look at old photographs of past holiday events. Pick photos that show significant objects or places, like a Christmas tree or a church your loved one used to visit, rather than photos of people only. This way, the person won't feel pressured if she doesn't remember who's in the photos.
The smells of the holidays are some of the best of the year. Favorites might include peppermint, pine, cinnamon, and ginger. Share a short activity that incorporates one of these scents, such as rolling balls of gingerbread cookie dough to bake (and eat!).

People with dementia live in the moment, not in the past. This is the gift they give to us. Take this gift and find a way to share some of the joy of the present. Even though your loved one might not remember it later, you will -- and the feelings of happiness will stay with both of you long after the moment is over.