PLEASE NOTE: Even though this blog is now dormant there are many useful, insightful posts. Scroll back from the end or forward from the beginning. Also, check out my writer's blog. Periodically I will add posts here if they provide additional information about living well with Dementia / Alzheimer's Disease.

Saturday, January 29, 2011

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.)

Thursday, January 27, 2011

The Enlightened Heart

Last night Gregory pointed to three words in a poem he was reading in the book The Enlightened Heart. He wanted me to make a sign so he could post it on the side of his bedside table. Today we tried to find the author and title of the poem but we couldn't. Will keep looking and repost if we find it. FOUND IT! From a poem by Lao-Tsu 571B.C in a book edited by Stephen MitchellMeanwhile, I think it is very telling that he chose these three words as important: SIMPLICITY, PATIENCE, COMPASSION.  Every night before he turns out the lights, he reads those three words aloud. Moving?

Wednesday, January 26, 2011

The Hats I Wear: Part 1

When we visit the doctor, I wear all of the hats that are needed. Gregory and I have always been open with each other (Gregory now a days as much as his language allows him to be.) While I have told a few white lies or selectively forgotten to inform him of something, we always discuss everything about our situation and I include him in all decisions if only to tell him "I have decided..." 

I keep anecdotal notes and print them out when we go to the doctor. I do most of the talking and let Gregory join in when he attempts to do so. Our doctors treat him with respect and always begin by addressing their questions directly to Gregory knowing I will "chime in" as necessary. When I am having to talk to the doctor about difficult issues (dealing with Gregory Alzheimer's and its progression) I will often appologize to Gregory for talking about him as if he wasn't there. At the point when I need to talk about issues that I do not want Gregory to know about, to help preserve his happy bliss, I will call the doctor ahead of time and discuss the issues privately. 

Gregory continues to accept my support graciously and to trust himself and his care to me. In fact he trusts me unconditionally (may it last forever) with his life.

Monday, January 24, 2011


I have passed over the next milestone.
Not good nor bad but a relief.
For some reason I am no longer angry when he does
Things that seem so "stupid."

I have passed over the next milestone.
Not good nor bad but a relief.
For some reason I really understand now
That he can't help it, he isn't able.

I have passed over the next milestone.
Not good nor bad but a relief.
Really understand that he can no longer
Make the connections that are needed.

I have passed over the next miestone.
Not good nor bad but a relief.
I seem better able to support him
And to be respectful, loving, and kind.

I have passed over the next milestone.
Not good nor bad but a relief.
He has passed over the next milestone and remains content
and that is good and that is a relief.

Sunday, January 23, 2011

A Very Narrow Approach

Today I am entertaining an acquaintance who is thinking of moving into downtown Evanston. She wanted my take on living here so I invited her over for some home made banana walnut bread and a cup of coffee.

She knows Gregory. I suggested that  he be here for the beginning of the visit but that he take himself out to lunch after a while. The timing of her visit cuts into his lunchtime. Also, he would probably not enjoy sitting around for the few hours while my guest and I chat.

I suggested he could have lunch at Pot Belly or Lulu's, both of which are within a block of the condo and ones with which he might be comfortable going to on his own. He replied, "Don't worry, I'll find food." I am worried. 

Then he said, "You know I think I will eat at that place .... No, never mind because I can't think of the name .... You know its on the street ... at the end of the block .... way down there."

I asked, "What kind of food do they serve?"

"The usual," he replied.

I couldn't pass up the opportunity to comment, "Well that narrows it down quite a bit." Gregory got the joke and we both laughed.

Then he continued. "You know .... We ate there .... Once .... Don't worry I'll find food."


Some people get up every morning and go to WORK. This may seem over simplistic to you, but bare with me.

WORK is part of their life and they get paid for it. After WORK, they go home and get on with living their life. The money they earn at WORK is what helps them pay for what they need to live; food, shelter, clothing, health care, entertainment, etc.

(A caveat here: Some people WORK several jobs. Some people not only WORK several jobs but also have a family to raise. Therefore some do not have a lot of time to enjoy life let alone have  enough money to provide the things their family needs.)

For some people WORK is living other people's lives. Nurses, doctors, home health care workers, rehab personnel, assisted living center staff, personal secretaries of the wealthy, Barak Obama's aids, etc. They get up every morning (or pm or night shift) and go to WORK. They spend their time at WORK making sure other people are safe, clean, comfortable, fed, entertained, etc. Then they go home and live their own life.

You get my point here. This morning after yet another "glitch" in Gregory's memory, I began thinking about the fact that my life has become the WORK of making sure Gregory is safe, clean, comfortable, fed, entertained, etc. While I do not get paid for my services (which are provided out of love) and while my WORK is 24/7, I still try to find some time to take care of myself and live my own life. Not easy.

As Gregory's personal, cognitive, emotional, and physical skills ebb and flow, as the "rules of the game" continue to change or at times do not exist, my WORK gets more difficult. And while I cannot imagine my life without him, I cannot begin to imagine how I will be able to continue to provide for his needs as they become not only more and more demanding, but as they become more and more cloud like. By this I mean undefinable, unidentifiable, non understandable. I know that I have options but meanwhile I have to get on with the day to day activities that support our life and try to deal with the emotions that overwhelm when the vail parts and I see the future.

At the same time I must mention that Gregory commented last night as we were drifting of to sleep, "I love my live." And while it is 18 degrees outside our condo is warm, our pantry is stocked, our bills are paid, our friends and family are supportive, our health is good, our life is good.

Saturday, January 22, 2011

Alert 1

Well, I've done it. "I've fallen and I can't get up." Read on...

As I have aged, I realize that I pass milestones that place me in my parent's generation. Over the years I would hear them talk about various conditions, changes, ways of looking at things and either I would hear them but not listen or I would write it off to "my parents being my parents." Now I understand.

Like my parents, we've moved to a condo and enjoy not having to maintain the house and grounds. We nap. We like to be at home at night and snuggle in. At restaurants we sometimes share entrees. Entertaining takes a toll so we do it easier or do it less. Pills are organized into our "S M T W T F S" boxes, white for day and blue for night. We do not eat too late at night. Pardon me ... but if we do not move our bowels we are aware of it. And so on...

Dealing with Gregory's Alzheimer's diagnosis has presented many other age related problems with which I have had no experience. But I am learning. For example, this week I ordered a Medical Alert System for the condo. If something was to happen to me (heart attack, crack on the head, broken hip) I am not sure that Gregory would be able to deal with the situation. When he is under stress, he temporarily looses even more of his abilities and I can picture myself laying on the floor trying to give him instructions or worse yet, passed out unable to give him instructions.

So now we have a large white box on my bedroom nightstand with its very loud speaker and bring red button (which lights up) marked EMERGENCY! I have a fob that I can wear around my neck that also has a red emergency button and I have a watchband button as well. Both activate the big box in the bedroom. I haven't taken to wearing the remote buttons when I am at home yet but probably need to get into the habit.

When I tested the system, within a minute of pressing the button someone came on the speaker box and asked (to be heard all through the condo unit) "Are you alright?"

I answered, "Yes I am testing the system."

"Am I speaking to Michael?" (On their records because I am listed as the "primary user."


"Is Gregory alright also?"


"We will mark this as a test of the system. Remember when ever you need help call us by pressing your emergency button. Thanks for using Alert 1."

Last night as I was drifting off I was musing about the service. Peace of mind is good.= but they forgot to ask about Mariah, our cat.

Coming Faster

This morning's conversation so far (48 minutes and counting.)

I asked G to bring his computer into my office so I could clean the screen. He did so. As I sprayed the screen and proceeded to wipe it clean, I explained that I had laid the screen flat so the cleaning solution wouldn't run into the computer.
G: "Could you do that for me?"
I look at him inquiringly.
G: "Oh, you are."

He came into the room and asked "What is today about?"
"Did you check the calendar on your computer to see?" I asked.
"No but I will." he replied.
A few minutes later I asked him what he had found out about today.
He thought for a few minutes and replied, "There was a long line of items but nothing I could tell."
We went to look at his computer together. He had been looking at his e-mail.
I showed him how to get to the calendar (again) and we saw together that there is nothing on the schedule for today.

He was pondering the medicine chest.
"Toothbrush?" I answered unasked.
Right. More pondering.
"Toothpaste?" I answered unasked.
Right. Brushing began.

He just tore a page off his "Day-At-A-Glance" calendar and as he was tossing the old page into the garbage commented with amazement, "It's still January?"

"It's 17 out. How should I dress?"

(Yesterday on commenting on the cold and asking a neighbor on the elevator what it was like outside, she answered, "Actually it's great. Sun is shining and its 80 degrees. I wish.

"Wow," G commented, "It has gotten warmer.")


Midnight, sleep no where in sight.

Today he sat down to his evening coffee,
Remembering the cookies but forgetting the coffee.

He was upset that the art book he has been looking through was gone,
Until I pointed out that it was next to him on the couch.

For dinner, I asked him to "Get the water."
He stood in front of the open refrigerator door deciding how to proceed.

Eventually he closed the door but then forgot what he was doing,
So he opened the door again to ponder the situation.

After a while he remembered and went to the cabinet to get two glasses.
He opened the refrigerator door and filled the glasses with water.

He stared into the refrigerator looking for the ice cubes.
"Bottom drawer," I suggested. He was able to follow through.

At bedtime a space was empty in his "pocket drawer,"
He didn't know what was supposed to go in the empty space.

When I asked him where his cell phone was,
All he could give me was a blank stare.

"Do you know what a cell phone is?" "Yes."
So I called the number to see what would happen.

Luckily we heard the phone ringing,
But he didn't know how to follow the ringing.

We followed the sound together into the closet in the bedroom,
And there on the floor, under his pants hanging neatly on the rod was his cell phone.

"How did this get there?"
Again a blank stare.

Last night at the restaurant, he couldn't figure out how to  "close" his cheeseburger,
Then he couldn't figure out how to use his knife to cut it in two.

When these situations remind me of what I have to look forward to,
I get numb. I get profoundly sad. I cannot even begin to imagine what I will do next.

Midnight, sleep no where in sight.

Thursday, January 20, 2011

Magic Wands

When asked how I would use my magic wand (Harry Potter Style) for Gregory and me I came up with the following. I do believe in magic but a wand will not really solve our problem unless we do the obvious: wave the wand and remove Dementia and all of its forms. Then while we are waving, lets get rid of all illness for everyone. Then create a world in which people could love rather than hate, help rather than harm, be truthful and loving. At least one more wave so no one has to be hungry, or thirsty, or in pain.  Wave a little more and let death be a natural way of moving on, not one of illness or violence, and make sure that the departure is not long lived (so to speak) and long suffered.

What I noticed in hearing others talk about their dealing with Alzheimer's is the huge amount of sorrow, loss, and frustration over things we cannot control. If I could better deal with those things I cannot control and feel better about those things I can control, I think I would be a better caregiver. So there, Wave ... Wave ... Wave.

Wednesday, January 19, 2011

What Does One Call It?

I like referring to Gregory's dementia in a number of ways.

We were grateful to get an "Alzheimer's" diagnosis from his Neurologist as that helped with winning our disability claims, both with a private company and with Social Security. With most of our doctors and with family and friends it is easier to call it Alzheimer's as most people have more of an idea of what that means. 

I avoid using the term "Dementia" except with doctors and friends who are "in the field." Dementia seems to refer to "something that happens to old people" which Gregory is NOT. Using the term "Dementia" does not begin to suggest the true nature of the difficulties in dealing with the afflicted person on a day to day basis which is usually not at all imagined by others.

Sometimes I refer to it as "Our Situation," or "Our Condition" which emphasizes that it is at least as much of a problem for me (maybe more so) as it is for him. I sometimes refer to it as "The Big 'A.'" 

I find myself replying to people's remarks about their forgetting where they put their keys, etc: "Yes we all have those problems as we get older ... but that is nothing like what Gregory and I are going through." I find it is important to me (and hopefully to others) to respond in this way as it seems that people make "excuses" or try to "relate" as a way of making themselves feel more comfortable with OUR situation and/or to ME make me feel better. Doesn't help!

The more I study the disease, the more I think Gregory's is a Frontotemporal Disorder. There are many types, symptoms, and names for Frontotemporal, the names do not matter. Gregory's symptoms are by now scattered across the various types of the Frontotemportal Disorder labels and descriptions. 

I learned more about this particular dementia in a book I ordered from The National Institute on Aging/National Institute of Health at (or call 800-438-4380.) 

The book was very helpful in helping me understand the more specific changes that are taking place in Gregory and in being supportive of hium as the changes continue, intensify, and/or show up for the first time.

Saturday, January 15, 2011


For some reason both Gregory and I have been drawn to poetry. I am not quite sure what he gets out of reading his poetry books but I find beauty, hope, understanding, explanations. Poetry deals with the essence. The words are carefully chosen, the images carefully drawn, the ideas carefull woven. For some reason recently, poetry has been talking to me. I wonder what it is saying to him.

Friday, January 14, 2011

Helpful Hints

I purchased a "Day-At-A-Glance" calendar for Gregory. He has lost track of time, of the day, of the month, maybe of the year. But he still can follow habits and one of them is ripping off a sheet from the calendar each morning. Sometimes during the day he will ask me the date or the day. I will respond, "What does your calendar say?" He will go look and answer his own question. In the beginning he got a little confused on Saturdays and Sundays because on the "Day-At-A-Glance" those two days share a sheet. I labeled those sheets more obviously and he seemed to learn the difference.

Tuesday, January 11, 2011


On the way home today I listened to "Always" on my iPhone sung by Mandy Patinkin. The tears flowed but the windshield wipers were going so everything evened out. These are my affirmations that followed by the lyrics of the song.

I will always love Gregory.
I do not want to be afraid.
I do not want to be angry.
I do not want to be sad.

I only want to be kind.
I only want to be loving.
I only want to be understanding.
I only want to be supportive.

I am working on changing these "I DO NOT WANTs" to " I AM NOT" and the "I ONLY WANTs" to "I AM!" I will get there.

I will always love Gregory.
I am not afraid.
I am not angry.
I am not sad.
I am kind.
I am loving.
I am understanding.
I am supportive.

By: Chet Forrest, Bob Wright, Edward Ward

Everything went wrong
And the whole day long
I'd feel so blue.

Walk along the swile
I'd forget to smile
Then I met you.

Now that my blue days have passed
Now that I have found you at last.

I'll be loving you always
With a love thats true, always.
When the things you've planned
Need a helping hand
I will understand, always. 

Days may not be fair, always
That's when I'll be there, always.
Not for just an hour,
Not for just a day,
Not for just a year.

Dreams will all come true
Growing old with you
And time will fly
Caring each day more
Than the day before
Til Spring rolls by.

Then when the Spring time had gone,
Then will my love linger on.

I'll be loving you always,
with a love that's true, always.
When the things you've planned,
need a helping hand,
I will understand, always, always.

Days may not be fair, always.
That's when I'll be there, always.
Not for just an hour,
Not for just a day,
Not for just a year, but always.

Sunday, January 9, 2011

Gregory Paints

Gregory continues to get great pleasure from his new art form. It has been so important to him and I do everything I can to encourage his pride in the work he is doing. Nancy Rosen, his Artist Angel, continues to advise as they work together in her studio.

Oil on Gessoed Stone Henge Paper

Oil on Gessoed Stone Henge Paper

Oil on Gessoed Stone Henge Paper

Oil on Gessoed Stone Henge Paper

Oil on Canvas

Oil on Gessoed Canvas

Oil on Gessoed Stone Henge Paper

Oil on Gessoed Stone Henge Paper

Oil on Gessoed Stone Henge Paper
Oil on Gessoed Stone Henge Paper

Oil on Gessoed Stone Henge Paper

Oil on Gessoed Stone Henge Paper

Oil on Gessoed Stone Henge Paper

Oil on Gessoed Stone Henge Paper

Oil on Gessoed Stone Henge Paper

Oil on Gessoed Stone Henge Paper

Sunday, January 2, 2011


On this last day of the Christmas/New Year's holiday, I want to share these lyrics with you. This is what Christmas is for Gregory and me. Even though we have been through a lot, we are blessed and we celebrate the magic that is our relationship, a relationship which will always be magic no matter what comes to pass. Christmas always helps remind us of what is important ... so we can keep going for another year.
Sending you my love,

Josh Groban

Children, sleeping.
Snow is softly falling.
Dreams are calling, 
Like bells in the distance.
We were dreamers,
Not so long ago.
But one by one, we
All had to grow up.

When it seems the magic slipped away... 
We find it all again on Christmas Day.

Believe in what your heart is saying, 
Hear the melody that's playing.
There's no time to waste, 
There so much to celebrate.
Believe in what you feel inside,
Give your dreams the wings to fly.
You have everything you need, if you just believe.

Trains move quickly
To their journey's end.
Are where we begin again.
Ships go sailing,
Far across the sea.
Trusting starlight, 
To get where they need to be.

When it seems that we have lost our way...
We find ourselves again on Christmas Day.

Believe in what your heart is saying, 
Hear the melody that's playing
There's no time to waste, 
There so much to celebrate.
Believe in what you feel inside,
And give your dreams the wings to fly.
You have everything you need, if you just Believe.

If you just believe.
If you just believe.
If you just believe...just believe...just believe.

Saturday, January 1, 2011

From The New York Times

December 31, 2010

Giving Alzheimer’s Patients Their Way, Even Chocolate

PHOENIX — Margaret Nance was, to put it mildly, a difficult case. Agitated, combative, often reluctant to eat, she would hit staff members and fellow residents at nursing homes, several of which kicked her out. But when Beatitudes nursing home agreed to an urgent plea to accept her, all that changed.
Disregarding typical nursing-home rules, Beatitudes allowed Ms. Nance, 96 and afflicted with Alzheimer’s, to sleep, be bathed and dine whenever she wanted, even at 2 a.m. She could eat anything, too, no matter how unhealthy, including unlimited chocolate.
And she was given a baby doll, a move that seemed so jarring that a supervisor initially objected until she saw how calm Ms. Nance became when she rocked, caressed and fed her “baby,” often agreeing to eat herself after the doll “ate” several spoonfuls.
Dementia patients at Beatitudes are allowed practically anything that brings comfort, even an alcoholic “nip at night,” said Tena Alonzo, director of research. “Whatever your vice is, we’re your folks,” she said.
Once, Ms. Alonzo said: “The state tried to cite us for having chocolate on the nursing chart. They were like, ‘It’s not a medication.’ Yes, it is. It’s better than Xanax.”
It is an unusual posture for a nursing home, but Beatitudes is actually following some of the latest science. Research suggests that creating positive emotional experiences for Alzheimer’s patients diminishes distress and behavior problems.
In fact, science is weighing in on many aspects of taking care of dementia patients, applying evidence-based research to what used to be considered subjective and ad hoc.
With virtually no effective medical treatment for Alzheimer’s yet, most dementia therapy is the caregiving performed by families and nursing homes. Some 11 million people care for Alzheimer’s-afflicted relatives at home. In nursing homes, two-thirds of residents have some dementia.
Caregiving is considered so crucial that several federal and state agencies, including the Department of Veterans Affairs, are adopting research-tested programs to support and train caregivers. This month, the Senate Special Committee on Aging held a forum about Alzheimer’s caregiving.
“There’s actually better evidence and more significant results in caregiver interventions than there is in anything to treat this disease so far,” said Lisa P. Gwyther, education director for the Bryan Alzheimer’s Disease Research Center at Duke University.
The National Institute on Aging and the Administration on Aging are now financing caregiving studies on “things that just kind of make the life of an Alzheimer’s patient and his or her caregiver less burdensome,” said Sidney M. Stahl, chief of the Individual Behavioral Processes branch of the Institute on Aging. “At least initially, these seem to be good nonpharmacological techniques.”
Techniques include using food, scheduling, art, music and exercise to generate positive emotions; engaging patients in activities that salvage fragments of their skills; and helping caregivers be more accepting and competent.
Changing the Mood
Some efforts involve stopping anti-anxiety or antipsychotic drugs, used to quell hallucinations or aggression, but potentially harmful to dementia patients, who can be especially sensitive to side effects. Instead, some experts recommend primarily giving drugs for pain or depression, addressing what might be making patients unhappy.
Others recommend making cosmetic changes to rooms and buildings to affect behavior or mood.
study in The Journal of the American Medical Association found that brightening lights in dementia facilities decreased depression, cognitive deterioration and loss of functional abilities. Increased light bolsters circadian rhythms and helps patients see better so they can be more active, said Elizabeth C. Brawley, a dementia care design expert not involved in the study, adding, “If I could change one thing in these places it would be the lighting.”
Several German nursing homes have fake bus stops outside to keep patients from wandering; they wait for nonexistent buses until they forget where they wanted to go, or agree to come inside.
And Beatitudes installed a rectangle of black carpet in front of the dementia unit’s fourth-floor elevators because residents appear to interpret it as a cliff or hole, no longer darting into elevators and wandering away.
“They’ll walk right along the edge but don’t want to step in the black,” said Ms. Alonzo, who finds it less unsettling than methods some facilities use, bracelets that trigger alarms when residents exit. “People with dementia have visual-spatial problems. We’ve actually had some people so wary of it that when we have to get them on the elevator to take them somewhere, we put down a white towel or something to cover it up.”
When elevator doors open, Beatitudes staff members stand casually in front, distracting residents with “over-the-top” hellos, she said: “We look like Cheshire cats,” but “who’s going to want to get on the elevator when here’s this lovely smiling person greeting you? It gets through to the emotional brain.”
New research suggests emotion persists after cognition deteriorates. In a University of Iowa study, people with brain damage producing Alzheimer’s-likeamnesia viewed film clips evoking tears and sadness (“Sophie’s Choice,” “Steel Magnolias”), or laughter and happiness (Bill Cosby, “America’s Funniest Home Videos”).
Six minutes later, participants had trouble recalling the clips. But 30 minutes later, emotion evaluations showed they still felt sad or happy, often more than participants with normal memories. The more memory-impaired patients retained stronger emotions.
Justin Feinstein, the lead author, an advanced neuropsychology doctoral student, said the results, being studied with Alzheimer’s patients at Iowa and Harvard, suggest behavioral problems could stem from sadness or anxiety that patients cannot explain.
“Because you don’t have a memory, there’s this general free-floating state of distress and you can’t really figure out why,” Mr. Feinstein said. Similarly, happy emotions, even from socializing with patients, “could linger well beyond the memories that actually caused them.”
One program for dementia patients cared for by relatives at home creates specific activities related to something they once enjoyed: arranging flowers, filling photo albums, snapping beans.
“A gentleman who loved fishing could still set up a tackle box, so we gave him a plastic tackle box” to set up every day, said the program’s developer, Laura N. Gitlin, a sociologist at Thomas Jefferson University in Philadelphia and newly appointed director of the Center on Aging and Health at Johns Hopkins University.
After four months, patients seemed happier and more active, and showed fewer behavior problems, especially repetitive questioning and shadowing, following caregivers around. And that gave caregivers breaks, important because studies suggest that “what’s good for the caregiver is good for the patient,” Professor Gwyther said.
Aiding the Caregiver
In fact, reducing caregiver stress is considered significant enough in dementia care that federal and state health agencies are adopting programs giving caregivers education and emotional support.
One, led by Mary S. Mittelman, a New York University dementia expert, found that when people who cared for demented spouses were given six counseling sessions as well as counselors whom they could call in a crisis, it helped them handle caregiving better and delayed by 18 months placing patients in nursing homes.
“The patient did not have fewer symptoms,” Dr. Mittelman said. “It was the caregiver’s reaction that changed.”
The Veterans Affairs Department is adopting another program, Resources for Enhancing Alzheimer’s Caregiver Health, providing 12 counseling sessions and 5 telephone support group sessions. Studies showed that these measures reduced hospital visits and helped family caregivers manage dementia behaviors.
“Investing in caregiver services and support is very worthwhile,” saving money and letting patients remain home, said Deborah Amdur, chief consultant for care management and social work at the Veterans Affairs Department.
Beatitudes, which takes about 30 moderate to severe dementia sufferers, introduced its program 12 years ago, focusing on individualized care.
“In the old days,” Ms. Alonzo said, “we would find out more about somebody from their obituary than we did when they were alive.”
The dementia floor was named Vermillion Cliffs, after colorfully layered rock formations formed by centuries of erosion, implying that, “although weathered, although tested by dementia, people are beautiful” and “have certain strengths,” said Peggy Mullan, the president of Beatitudes.
The facility itself is institutional-looking, dowdy and “extremely outdated,” Ms. Mullan said.
“It’s ugly,” said Jan Dougherty, director of family and community services at Banner Alzheimer’s Institute in Phoenix. But “they’re probably doing some of the best work” and “virtually have no sundowning,” she said, referring to agitated, delusional behavior common with Alzheimer’s, especially during afternoon and evening.
Beatitudes eliminated anything potentially considered restraining, from deep-seated wheelchairs that hinder standing up to bedrails (some beds are lowered and protected by mats). It drastically reduced antipsychotics and medications considered primarily for “staff convenience,” focusing on relieving pain, Ms. Alonzo said.
It encouraged keeping residents out of diapers if possible, taking them to the toilet to preserve feelings of independence. Some staff members resisted, Ms. Alonzo said, but now “like it because it saves time” and difficult diaper changes.
Family members like Nancy Mendelsohn, whose mother, Rose Taran, was kicked out of facilities for screaming and calling 911, appreciate it. “The last place just put her in diapers, and she was not incontinent at all,” Ms. Mendelsohn said.
Ms. Alonzo declined to pay workers more to adopt the additional skills or night work, saying, “We want people to work here because it’s your bag.”
Finding Favorite Things
For behavior management, Beatitudes plumbs residents’ biographies, soothing one woman, Ruth Ann Clapper, by dabbing on White Shoulders perfume, which her biographical survey indicated she had worn before becoming ill. Food became available constantly, a canny move, Ms. Dougherty said, because people with dementia might be “too distracted” to eat during group mealtimes, and later “be acting out when what they actually need is food.”
Realizing that nutritious, low-salt, low-fat, doctor-recommended foods might actually discourage people from eating, Ms. Alonzo began carrying chocolate in her pocket. “For God’s sake,” Ms. Mullan said, “if you like bacon, you can have bacon here.”
Comforting food improves behavior and mood because it “sends messages they can still understand: ‘it feels good, therefore I must be in a place where I’m loved,’ ” Ms. Dougherty said.
Now, when Maribeth Gallagher, Beatitudes’ dementia program director, learns someone’s favorite foods, “I’m going to pop that on your tongue, and you’re going to go ‘yum,’ ” she said. “Isn’t that better than an injection?”
Beatitudes also changed activity programming. Instead of group events like bingo, in which few residents could actually participate, staff members, including housekeepers, conduct one-on-one activities: block-building, coloring, simply conversing. State regulators initially objected, saying, “Where’s your big group, and what you’re doing isn’t right and doesn’t follow regulations,” Ms. Alonzo said.
Ms. Mullan said, “I don’t think we ever got cited, but it was a huge fight to make sure we didn’t.”
These days, hundreds of Arizona physicians, medical students, and staff members at other nursing homes have received Beatitudes’ training, and several Illinois nursing homes are adopting it. The program, which received an award from an industry association, the American Association of Homes and Services for the Aging, also appears to save money.
Arlene Washington’s family moved her to Beatitudes recently, pulling her from another nursing home because of what they considered inattentive and “improper care,” said her husband, William. Mrs. Washington, 86, was heavily medicated, tube fed and unable to communicate, “like she had no life in her,” said Sharon Hibbert, a friend.
At Beatitudes, Dr. Gillian Hamilton, administrative medical director, said she found Mrs. Washington “very sedated,” took her off antipsychotics, then gradually stopped using the feeding tube. Now Mrs. Washington eats so well she no longer needs the insulin she was receiving. During a recent visit, she was alert, even singing a hymn.
That afternoon, Ms. Nance, in her wheelchair, happily held her baby doll, which she named Benjamin, and commented about raising her sons decades ago.
Ms. Alonzo had at first considered the doll an “undignified” and demeaning security blanket. But Ms. Gallagher explained that “for a lot of people who are parents, what gives them joy is caring for children.”
“I was able,” Ms. Gallagher said, “to find Margaret’s strength.”
Ms. Gallagher said she learned when approaching Ms. Nance to “look at her baby doll, and once I connect with the doll, I can look at her.”
She squatted down, complimented Benjamin’s shoes, and said, “You’re the best mom I know.”
Ms. Nance nodded earnestly.
“It’s good to know,” Ms. Nance said, “that somebody knows that you care.”