It went great. She was just like I always knew her -- sharp at the cards -- and seemed to enjoy the get together .....

Forgetting how to cook, or how to make repairs, or how to play cards — activities that were previously done with ease and regularity.

a valuable instrument for gaining and developing, in the privacy of an interminable love affair, insights that are queer but true.  ... [A duprass is] a sweetly conceited establishment.

Memory is a mental stabilizer and without it the mind becomes chaotic and unstructured, allowing 1999 and 1940 to merge.

A new world greets me every morning now. I will never see myself or the world the same way. I must cling to optimism and avoid depression, but today I am so shattered I can hardly hold a word, phrase, or sentence long enough to acknowledge it and put it on paper. It is as if I received a death sentence and I have to begin a circumscribed life in a prison of fear. I see myself differently, almost as if a death ray penetrated me. I look in a mirror and discover I am crying.

Judy began noticing a decline in Jeff shortly after his mother died of Alzheimer's in April 2002. The couple was fighting more often, he was frequently tired, he even ran a red light. Then she found out he had been terminated from his job, in March 2003. That was the catalyst that got them to the doctor. After seeing five doctors in five weeks, Jeff finally received his diagnosis from Dr. Donald Schmechel at Duke.

There are no easy answers here, no happy endings. Judy is in the unenviable position very familiar to those whose loved ones have dementia. She has started the grieving process of losing Jeff, while still having a husband.

 

She realizes she has to start thinking about death. Maybe it will be one year, maybe five--she doesn't know. The hardest thing to deal with these days is Jeff's continual decline. "The challenge of every day is watching him change," she says.

Sundown syndrome--also called sundowning or sunsetting--is a behavior common in people with Alzheimer's disease. It describes the episodes of confusion, anxiety, agitation, or disorientation that often occur at dusk and into the evening hours. The episodes may last a few hours or throughout the night.

• Schedule your day so that the more difficult tasks are done early in the day, when the person is less likely to become agitated.
• Watch the person's diet and eating habits. Restrict sweets and drinks with caffeine to the morning hours. Try serving the person a late afternoon snack or an early dinner. To help the person relax, try decaffeinated herbal tea or warm milk.
• Keep the house or room well lit. Close the drapes before the sun goes down, so the person doesn't watch it become dark outside.
• If the person falls asleep on the sofa or in a chair, let him or her stay there. Don't wake the person to go to bed.
• Try distracting the person with activities he or she enjoys. Soothing music or a favorite video may help, as well.
• Encourage the person to engage in some physical activity--such as walking, if able--during the day. This may help him or her to sleep better at night.

• Mothering neighborhood -- includes a baby doll, diapers, a stroller, and baby clothing
• Office neighborhood -- includes a typewriter, a desk, and an unplugged telephone
• Sewing neighborhood -- an unplugged sewing machine (with no needle), swaths of fabric, and spools of thread
• Knitting neighborhood -- knitting needles, skeins of different colored yarn
• Golfing neighborhood -- golf balls, a golf bag, golf clubs

The types of neighborhoods depend on the life profile of the residents of the memory care floors at a Sunrise facility. If a person's record shows they used to work most of their life in an office, the staff at Sunrise will assemble an office neighborhood. Likewise, if a person played a lot of golf earlier in their life, the staff will set up a golfing neighborhood. The types of neighborhoods are flexible and can be adapted to the profiles of the current mix of residents.

Susan said that the reminiscence neighborhoods have a powerful calming effect on the memory care residents. For example, as the day concludes and the light fades outside the center some of the residents experience the sundowning effect (see my blog tomorrow) and become depressed or agitated. The staff notes which residents are prone to sundowning and anticipate this problem by leading the residents to one of the reminiscence neighborhoods. According to Susan, the neighborhoods immediately engage the resident, and as they go through the actions of activities they've done all their lives, they grow more calm and relaxed.

According to Susan, it is important that the staff be trained to facilitate the residents' use of the reminiscence neighborhoods. She said residents shouldn't be led to the neighborhoods and then left. It was important for the staff to play-act and orient the resident to the activities (working at the desk, sewing, caring for the "baby," etc.) before they left the area.

"One of the biggest strengths of a Sunrise staff," she said, "is our constant training. We are trained when we begin work at a Sunrise community. And we receive ongoing training while we work at the community."

Susan said she had two tips for anyone dealing with seniors who are suffering from dementia:

1. How you talk to the person is important. Susan sees lots of relatives trying to correct their family members when they make memory mistakes. Susan says that family members have to remember that this is an incurable disease and the memory can not be "set straight." Relatives can't fix the person's memory, but they can agitate the person and make them even more uncomfortable than they already are.
2. It is important to use the right words. Professional caregivers stay away from words like "dementia" and "Alzheimer's Disease" when they are talking to residents. Words such as these only increase a resident's agitation and feeling of insecurity. Instead, for example, the staff at Sunrise might use words like "memory care" and "did you have one of your pleasant days" when they talk with residents.
    
   [If you liked this article, please go to my home page at Video Life Narrative where you can learn about videos you can create to honor the life of a family member or friend.]

Reminiscence programming for older adults allows them to validate and analyze their experiences and sometimes share them with another generation, either through direct interaction or through recording in print or on tape.

Old scrapbooks

Photos 

Jewelry

Clothing

Music

Crafts, embroidery, samplers

Pressed flowers

Pets

Sports equipment

Anything related to life accomplishments

A Life Story in a Box

Residents of the Memory Support Unit of Classic Residence by Hyatt Care Center all have memory boxes in front of their rooms. The boxes serve to calm and relax the residents, and they act as "apartment numbers" for the residents to identify their rooms.

They also act as "triggers" that spark residents' long-term memories. In "There's a Story Behind Every Item in the Box," Marsha Kay Seff writes in The San Diego Union-Tribune about the memory box in front of Willma McFarlane's apartment door:

The pretty porcelain bride and groom in her memory box sat atop 89-year-old Willma McFarlane's wedding cake more than 65 years ago. She was married for almost 54 years when her husband died, she says, pointing out the yellow porcelain flower that was a present from him.

"The Haviland China plate with the red roses belonged to a one-time set of 122 dishes, painted by her mother's aunt. Most of the them broke in 1929, when the family moved from Michigan to California and the trained lurched," according to Louise Engleman, one of two daughters.

"You didn't ask me who that is," McFarlane says, pointing to a photo in her memory box. "It's my senior granddaughter, my first born. She's cute . . . and smart, too."

Engleman reminds her mom, "It's your great-granddaughter. You have four grandchildren and two great-granddaughters."

Your Life Is a Tapestry

Anything that evokes vivid memories can appear in a memory box or reminiscence kit. The main objective is to help a senior recapture memories from their life. According to the CNN Report "Mementos Preserve Memories:"

Your life is like a tapestry, woven from your memories of people and events. Some threads are dark, while others are bright. Your individual tapestry shines vividly in your mind, reminding you of who you are, where you've been and what you've done.

Alzheimer's disease gradually robs people of the memories that make up their tapestries. You can help mend these holes by creating a tangible repository of memories — in a scrapbook, videotape or audiotape.

Nostalgic Music and Videos Help Stimulate Memories

As part of a three-year study funded by the national Alzheimer's Association, environmental psychologist, Dr. Richard Olson, studied the responses of dementia patients to old-time music and videos, as compared to the regular activities offered through eldercare programs. According to Olson, the difference in the patients' reactions was "dramatic:"

"Even people who normally slept or withdrew from activities such as sewing, bingo and card games were engaged by musical selections from the '30s and '40s," said Olsen. "They would smile and keep time with the music, sing along with the lyrics, and some even got up and danced."

Olson said that his Musical Memory Lane project appealed to patients even in the more advanced stages of dementia because:

Long-term memory seems to last well into the later stages, and music is often the last stimulus to which dementia patients respond.

Can a Video Recapture Memories?

Each one of us can assemble a reminiscence kit for our parents, grandparents, and older friends. One of the best ways to organize the kit is in the form of a life story -- a chronicle that takes the person from their birth right up to the present. A life story validates the person and celebrates their life. In the CNN article above, the reporter interviewed Dr. Glenn Smith, a neuropsychologist at Mayo Clinic:

"By creating a life story, you affirm for your loved one all the positive things he or she has done in life and can still do," says Dr. Smith. "Even after your relative's memories start to fade, creating a life story shows that you value and respect his or her legacy. It also reminds you who your loved one was before Alzheimer's disease."

One of the best ways to create a life story is to use a video. All of the elements that are in a reminiscence kit (old clothing, photos, music, scrapbooks, etc.) can be videotaped in chronological order. This process creates a life story narrative. A person can watch all these elements come together on a TV screen. If the video also contains interviews with members of the family and friends, then it goes beyond a reminiscence kit. Pieces of other people's memories are also captured on the video and create the larger tapestry that makes up a person's life.

The Video Biography Project

Dr. Gene Cohen of George Washington University and the National Institute of Aging has created a video biography project, modeled after the video biographies produced by the historian Ken Burns. Dr. Cohen created this project after his own father became afflicted with Alzheimer's Disease.

NBC News did a TV special on one of Cohen's client families after Bessie, the mother, was diagnosed with Alzheimer's. For six years, Bessie's son Sam watched helplessly as his mother's disease stole her away from him. Eventually Bessie had to be moved to an institution that specializes in care for seniors with Alzheimer's

The video that Sam created gave him reason to hope. It wasn't complicated. He just took the family's video camera and used it to record old photographs and other mementos. Still, what he came up with was a very personal movie.

Sam didn't know what to expect. He was afraid that his mother wouldn't remember anything on the video. He went to the Alzheimer's facility and sat down with his mother in front of the TV. The two of them, mother and son, watched the movie together.

After the video was over, Sam was excited. "I feel like today is one of the better experiences I've had with my Mother in months," he said. He told NBC interviewers that he planned to add new new materials to the video and show it to his mother over and over.

Dr. Cohen is optimistic, too. He knows that video biographies cannot slow the inevitable progress of Alzheimer's. On the other hand, the videos are valuable because "they can bring a son and a mother together once again."

[If you liked this article, please go to my home page at Video Life Narrative where you can learn about videos you can create to honor the life of a family member or friend.]

Having a family history of Alzheimer's disease increases your risk of developing it ... Those with one parent with the disease have a 1.5 times greater chance of developing it, and those with two afflicted parents have a 5 times higher than average risk.

 

Also, as you age, your chances for Alzheimer's Disease increase:

The risk of developing Alzheimer's disease increases with increasing age up to about age 90. Researchers estimate that as many as 50% of those over 85 have the disease.

I'm 56 years old, and I worry every day that I may be in the early stages of Alzheimer's. I am often forgetful, my short-term memory seems to have vanished, and every time I struggle to remember someone's name, the thought occurs to me that maybe this is an early symptom of my Alzheimer's. Or if I go down to the kitchen to get something and then can't remember what it was I wanted, I think: Is this how it feels to have Alzheimer's?

Fortunately, the Alzheimer's Association has published a helpful list of the ten warning signs for Alzheimer's:

1. Memory loss. Forgetting recently learned information is one of the most common early signs of dementia. A person begins to forget more often and is unable to recall the information later.

What's normal? Forgetting names or appointments occasionally.

2. Difficulty performing familiar tasks. People with dementia often find it hard to plan or complete everyday tasks. Individuals may lose track of the steps involved in preparing a meal, placing a telephone call or playing a game.

What's normal? Occasionally forgetting why you came into a room or what you planned to say.

3. Problems with language. People with Alzheimer’s disease often forget simple words or substitute unusual words, making their speech or writing hard to understand. They may be unable to find the toothbrush, for example, and instead ask for "that thing for my mouth.”

What's normal? Sometimes having trouble finding the right word.

4. Disorientation to time and place. People with Alzheimer’s disease can become lost in their own neighborhood, forget where they are and how they got there, and not know how to get back home.

What's normal? Forgetting the day of the week or where you were going.

5. Poor or decreased judgment. Those with Alzheimer’s may dress inappropriately, wearing several layers on a warm day or little clothing in the cold. They may show poor judgment, like giving away large sums of money to telemarketers.

What's normal? Making a questionable or debatable decision from time to time.

6. Problems with abstract thinking. Someone with Alzheimer’s disease may have unusual difficulty performing complex mental tasks, like forgetting what numbers are for and how they should be used.

What's normal? Finding it challenging to balance a checkbook.

7. Misplacing things. A person with Alzheimer’s disease may put things in unusual places: an iron in the freezer or a wristwatch in the sugar bowl.

What's normal? Misplacing keys or a wallet temporarily.

8. Changes in mood or behavior. Someone with Alzheimer’s disease may show rapid mood swings – from calm to tears to anger – for no apparent reason.

What's normal? Occasionally feeling sad or moody.

9. Changes in personality. The personalities of people with dementia can change dramatically. They may become extremely confused, suspicious, fearful or dependent on a family member.

What's normal? People’s personalities do change somewhat with age.

10. Loss of initiative. A person with Alzheimer’s disease may become very passive, sitting in front of the TV for hours, sleeping more than usual or not wanting to do usual activities.

What's normal? Sometimes feeling weary of work or social obligations.

[If you liked this article, please go to my home page at Video Life Narrative where you can learn about videos you can create to honor the life of a family member or friend.]

 Elderly patients with diabetes, cardiovascular disease or the apolipoprotein E e4 gene, which is linked with Alzheimer's disease, can lose their memory up to eight times faster than their healthier counterparts, according to a report in JAMA. Researchers suggest that exercising regularly and eating a healthful diet may help protect against short-term memory loss, notes Psychology Today.

It's very complicated. In fact, some people may become very emotional in the beginning, because they appreciate the changes and they're exposed to the loss of their old selves. It's also because many of us use understanding to deal with loss. We rationalize the loss. We have grief stages and we deal with this or that. These people don't have the ability to rationalize, the ability to think, to abstract, and the losses and stressors and other adverse experiences of life--they become magnified or remain unprocessed. You cannot "reason them away." In fact, you may even have hyperemotionality, increased emotionality.

Later in the disease, as the frontal lobe begins to be impaired, the emotions may become temporarily flat, until a later stage, when the cortex is affected and the more primitive emotional centers become disinhibited. And the way that the subcortical areas process emotion is different from the way the [cerebral] cortex processes emotion. You lose the cortical refinement, and you become entirely subjected to more primitive types of emotional response, where silly laughter or aggression and assaultiveness may become your mode of emotional life. It's a different type of emotional life. It's a more primitive type of emotional life, but you don't lose your emotions.

In other words, a person doesn't lose their emotions, they just go through stages: First, intense emotions. Second, flat emotions. Third, uninhibited "primitive" emotions.

Dr. Koliatsos' thoughts about how understanding informs our emotions may help explain what is happening to mom. According to Koliatsos, we "know" how to be emotional when we can put what happens to us into some kind of context. In a sense, we reason our way through our emotions and what emotion is appropriate in a given situation. Our brain figures out what kind of emotion is right and how much emotion we should have. But if we can't place an event (like Mike's death) into any kind of context, we're in a vacuum. We don't really have any reason to be emotional because it's the context (all the years of knowing Mike, of knowing his family, of loving him) that's lost. Without all the memories to back it up, there is no basis for being emotional.

I love my mom dearly. I feel terrible if she is going through any of these things. I will be visiting her soon, in two weeks. I will see how she is doing when I get to live with her for a few days.

And there is another way of looking at this. It's a blessing, I guess, that Mom is not feeling the sense of loss over Mike's death that I feel. She isn't feeling grief because she isn't sensitive to events like this the way she used to be. She is in neutral. So the burden is more on those of us around her to: (1) Treat her in a loving, sensitive way, accepting that it's okay for her to experience things this way. And: (2) Fill in the blank spot in her emotionality and take her place in expressing grief, loss, memory and love with each other and other family members who are now going through a grieving process.