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new view of caregiving overlaod & patient distress
Posted: Wednesday, December 16, 2015 10:08 AM
Joined: 9/12/2013
Posts: 3608

Reading a memoir called Keeper written about a woman who ends up being the care giving to her mother in law who has dementia and her husband who is in a bad mood.

Because it is actually a very cheerful portrayal of how taxing it is to end the ONE in charge and explains how her MIL's disease takes away all her private thinking time, work time, and requires an endless supply of understanding that which she does not want to HAVE to figure out, I got a fresh sense of the exasperation of the job.

How I experienced caregivers based on personal observation, reading on boards and in other articles and their comment sections:

Exasperated, Fed Up, Angry, Unappreciated, Lonely, Disappointed, and sometimes Guilty, Spiteful, and even Delusional.

People with dementia : same as above to varying degrees, fearful of becoming a burden, remorseful for the need for so much help, dreading becoming an Empty Vessel left in a germy nursing home in a drawn out death watch.

Depending on prior experience with Alzheimer's or other dementia, access to financial means, and the quality of support, and amount of natural desire to care for others (taking pleasure in caring for a dependent) it looks to me there is more of a need for support through the illness in terms of affordable and enjoyable day care, unique self created teams to relieve pressure and allow for fun, relaxation, what matters to the individuals affected.

For the late stages perhaps hospice could expand into an Alzheimer Comfort and Support network including providing opiates or cannabis for the person with dementia if there is an extended time of dying, bed sores, broken bones, anxiety, etc.

Soothing my fears of being abandoned to suffer as if I am already dead:

 I imagined myself in my worst case scenario and that my children and grandchildren feel I am no longer there so they no longer have to visit. During that time I will be praying for their happiness. Until I die I will pray for the happiness and peace for everyone.


Posted: Wednesday, December 16, 2015 1:16 PM
Joined: 1/28/2013
Posts: 2659

The main message of that book should be that the dementia experience is just as new and mysterious to the caregivers as it is for the PWD.  There is no map to that new country where our LO is slowly going.  We can't speak the language.  The same old words have a new meaning, and it takes us time to catch on.  We never really catch up.

I'm reminded of the Johnny Cash cover of the song, Hurt:  "Beneath the weight of time, the meaning disappears.  You are someone else, and I am still right here."

I think it looks the same to the person with dementia, and it's very hard for both.  We're both still right here, but 'here' is a different place.

Don't worry about becoming an empty vessel.  Infants can't communicate well, but there's still somebody inside that we can feel.  The love will still be there.

Iris L.
Posted: Wednesday, December 16, 2015 1:16 PM
Joined: 12/15/2011
Posts: 18519

I see many of the caregivers the same, but I do not see myself as you see us, Alz+.  I see myself as a person who is making lemonade out of lemons.  I am a person who is going alone in carving a good life for myself, despite the multitude who want to negate, minimize and destroy me.

I am not moody or negative.  I am not a burden.  I am not an empty vessel.  Indeed, I have spent valuable time and energy in rescuing other people from their problems, when I could have spent that time and energy on myself.

I have learned that it takes having a fulfilling philosophy of life to live with dementia and cognitive impairment and other disability.  I have more disability than cognitive impairment, which is more problematic to me than cognitive impairment.  I have no outside help. At this stage, I don't want outside help, because I have found them to be treacherous to me.

I call us Dementia Pioneers.  I believe we should all become pro-active in our own care, while we can.  Other people do not know what we need, except for a very few.  They can't be trusted.

I only want people around me who are supportive of me--people who value me.  Even if it is only one.

One thing I notice about the caregivers, is that they seem to be continually surprised by their LOs forgetfulness or impaired thinking.  Hellooo!  It's a disease of forgetfulness and impaired thinking, people!  Many seem to be in denial that this is what dementia is.  They have their own form of anosognosia.

Iris L.

Posted: Wednesday, December 16, 2015 2:26 PM
Joined: 1/28/2013
Posts: 2659

The only thing that surprises me anymore is a new lost function the first time I identify it.  For instance, my mother had washed her face with Noxema every night of her life since I was born, and I was shocked when she told a doctor that she no longer bothered to wash her face daily.  I don't know how long that had gone on.  I just assumed her old habit would stick with her.

Now, every four weeks or so, I have to explain to her why daily face washing is for skin health rather than wrinkle prevention and remind her to use both the Noxema and water.  Same with showering --she'd insist she didn't sweat anymore and had never bathed more than once a week in her life.  These things do come as a surprise when you identify them.  The memory was no surprise, except recently when she asked me what city we live in.  That was new.  It's like watching a forest fire go through her brain, as Andrea Gillies put it.  Here goes one tree, then another.

I don't see you, Alz, or Iris as empty vessels.  Nor is my mother, who has not really declined all that much in three years since she's been living with me.  The spirit remains no matter what.


Posted: Wednesday, December 16, 2015 7:23 PM
Joined: 9/12/2013
Posts: 3608

Unforgiven - this was a thought process that came to me to deal with my end of life fears for the part where people are sick, tired, broke, and no longer think the person with dementia worth the trouble (as in remarks to "go walk in the snow and die" type).

I believe we are not Empty Vessels ever, but we are perceived as that when we can no longer verbally communicate, or an extended end stage.

What you wrote about continually being surprised by some new loss is profoundly accurate. 

  Impossible for ONE person to take care of a person becoming disabled by dementia for an extended period of time, unreasonable and unhealthy and yet so many people are doing it because what choice is there?

 Why the focus is on finding a CURE when everyone needs day to day life support?  The person with dementia can not arrange for relief for themselves, and certainly not for the person with the responsibility. Commonly it just takes too long with too much suffering because the set up is inadequate, not because of lack of love or compassion.

thanks for always having interesting feedback Very grateful to you for that!

Posted: Wednesday, December 16, 2015 7:52 PM
Joined: 9/12/2013
Posts: 3608

Iris, what you wrote about having a healthy lifetime philosophy being a great part of "how it goes"!

You seem to have that, it shines in the way you communicate, not just that you are intelligent, but wise.  Can't recall you ever discussing your childhood but you seem so stable and I love that.

This was an inarticulate posting about understanding more the way my Mom treated my dad and my own husband's patience and endurance limits. Expecting him to ever adjust to his wife in a decline that goes on for years, lacking relief from needing to be around, my fear he could drive away and never come back.

I try to be calm, to appreciate him, to be kind. Yet we are alone so much! We both feel the cold shoulder of my family, and his family is not at all interested except for him to be available to them when needed.

I have been in many nursing homes and have seen people suffering in ways that seem inhumane. You mentioned you do not want outside help as you have found them treacherous.  I have witnessed a lot of bad care.

 Enjoy living alone while it is possible,  you have created a really good life and I learn from you doing that.

 As I lose more ground my fears of needing the Outside Help increase. I began to doubt my ability to endure, to fear losing my capacity to enjoy anything and to become a hopeless burden to others I count on and love. 

  I calmed my fears by telling myself if I live to the point of total helplessness, and the worst happens, abandonment or cruelty - I will not be in despair but pray for the happiness of others.  My way of taking care of myself through the end of life.

I had been caught up in thinking I could convince my husband or children or the caregivers leaving comments into seeing the beauty I found in caring for others and magically lifting the their suffering. Some words that would make it all go smoothly.

But I now understand there is not a support network established that makes this possible. People need actual show-up help now more than hope for a cure some day to handle the illness more gracefully. I can't provide that to anyone, not even for myself.

Posted: Wednesday, December 16, 2015 8:38 PM
Joined: 12/4/2011
Posts: 21250

While I have not been diagnosed with any illness I too worry about my care as I age.  Not everyone has a massive heart attack or even a health issue that is short. ..many illnesses need care for an extended period of time. I took the best possible care I could of my husband until he took his last breath. Who is going to do that for me if needed?

Because of my husband's illness I am no longer innocent...I will make a plan for the future that hopefully will meet whatever needs I may have.

I am so grateful to those of you here and on the other forums. You make the unforeseen more manageable.

Iris L.
Posted: Thursday, December 17, 2015 2:12 AM
Joined: 12/15/2011
Posts: 18519

I hear you, Alz+.  You chose the screen name Alz+ for a reason.  To look for the positive, or to make things better.  You have already done that in regards to daily life, in encouraging us to manage our environment and to SMILE.  

Now you are thinking about the end.  I believe you can come up with a paradigm for yourself.  You have already convinced me that the end does not have to be as bad as people say it could be.

Many family members are scrambling around in the dark, figuratively.  They are uneducated about living with a person with dementia.  The advantage of early diagnosis is we can educate ourselves, and hopefully educate the people who we want to be close to us.  If they are unwilling, we can find new people.  That's my plan.

I believe we have to be pro-active and figure out now, what we want for ourselves for the future.  Only we can do it.  We can't rely on others, because they don't know what we want or need, for the most part.  

There are a small number of people who are forward thinking and are learning how to treat us.  They are out there, scattered about.  We have to find them.

Have you read this article?  It's about making life easier and more pleasant for the patient with dementia, and thus, also for the care partner.

Giving Alzheimer’s Patients Their Way, Even Chocolate


Published: December 31, 2010 

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. 

A 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-like amnesia 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 a new center on aging 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, dementia program director for Hospice of the Valley, which collaborates in running Beatitudes's program, 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.” 

This article has been revised to reflect the following correction:

Correction: January 5, 2011

Because of an editing error, an article on Saturday about a comfort-centered approach to Alzheimer’s caregiving misstated the professional affiliation of Laura N. Gitlin, a sociologist at Thomas Jefferson University. Dr. Gitlin has been appointed director of a new center on aging at Johns Hopkins University; she is not the newly appointed director of the Center on Aging and Health at Johns Hopkins, a separate entity.

A version of this article appeared in print on January 1, 2011, on page A1 of the New York edition with the headline: Giving Alzheimer’s Patients Their Way, Even Doses of Chocolate.

Posted: Thursday, December 17, 2015 1:13 PM
Joined: 9/12/2013
Posts: 3608

YES I did read that article and read it again in your post. thank you!

I thought I could post magic words on boards and in comment sections that would help swell the tsunami of demand for fabulous care for dementia folks!

what maybe threw me off on how easy it would be to teach/enlighten caregivers who are overwhelmed and living with no time to themselves, was that I knew nothing about ALZ care when m Dad got ill, but we just related.

Maybe it was years of living with dogs and being able to interpret their asking for something without words. Or treating animals by just sensing their body language and energy.

I got to work on an old mare who was roughed up in a farm field by some stallions. She had a leg wound and I did manual lymphatic drainage to help it heal. But she was forcefully pushed again and went into a depression so her owner asked me to come check her out. I immediately picked up on her broken heart from loss of status, and when I touched her she started leaning into me. I had to call out "NO!" or I would have been under her body in 3 seconds! so she relaxed and we talked about her dignity and importance and how much she was loved and valued and she lay down in her stall and I cried by her side for awhile.

The next day her owner called to say she had walked into the field of stallions and went to her favorite tree, lay down and died.

This seemed very normal and right to me, to communicate this way - heart to heart.



Posted: Thursday, December 17, 2015 1:33 PM
Joined: 1/28/2013
Posts: 2659

I grew up with cats and have owned horses since my early teens, so it comes naturally for me to communicate non verbally without thinking I'm doing it with an 'empty vessel'.  Of course, cats and horses don't think exactly like human beings do, and we have to take that into account, but there is definitely 'someone'in there who can understand what I say even though I have a harder time understanding back.

It is a little harder to work with a LO because the spoken words used to mean one thing, and now they mean something else.  I think we caregivers are doomed to be one step behind, even when we're trying our best.  This is a disease that pushes our cognition and ability to adapt to the limits and beyond.


Posted: Thursday, December 17, 2015 2:49 PM
Joined: 7/24/2015
Posts: 3020

But when you work with the horses, words are just sounds...and it is the energy and intent behind the words that have meaning.  So too with dementia care, especially as it where I am at.  Maybe people in earlier stages want regular words, but to me it is all about how people act.  How they move, the tone of their voice, the context...that is what I get my cues from. 

Example, my daughter cut her hair short...and to me, visually, is no longer my daughter.  But, if she acts like my daughter, and sounds like my daughter, I can proceed as though she really is my daughter...even though, I am never quite sure. 

When workers act comfortable with me, I can be comfortable with them.  And so on. 

Words mean less than energy.  If someone is angry and they come with smile and nice words, I only pick up on the angry.  Because words often don't match, I can't trust my understanding of them. 



Iris L.
Posted: Thursday, December 17, 2015 9:31 PM
Joined: 12/15/2011
Posts: 18519

I used to work with infants.  Yes, we can learn to communicate with others without words.  

What I got from the article is that patients with dementia who are responded to and whose needs are met, don't have behavioral problems.  We patients do not have to fear becoming out of control, if we are with people who can respond to us appropriately.  The trick is finding such people.  Probably 1% of the population.  

I can tell that the principle of the article is correct, in my own life.  When I am living in my own home with no stress, I am comfortable.  When I have to leave my home, I feel stressed.  It might be great if I could stay home all the time, but I know so much isolation would not be good for me, plus I need to get out for supplies and other things.  But I have determined that the aim of my life will be to remove stressors from my life as much as possible.  The goal will be to establish and maintain balance.

Iris L.

Posted: Sunday, December 20, 2015 12:08 PM
Joined: 3/25/2015
Posts: 1119

Great article, Iris! Thanks for sharing. I appreciate your insight and your willingness to help others through information and advice on these boards. You are an inspiration.

Sun, glad to see you are posting again. I'd missed you and was worried about you.

Posted: Tuesday, December 22, 2015 7:02 AM
Joined: 9/12/2013
Posts: 3608

The_Sun_Still_Rises wrote:

..  Maybe people in earlier stages want regular words, but to me it is all about how people act.  How they move, the tone of their voice, the context...that is what I get my cues from. 

When workers act comfortable with me, I can be comfortable with them.  And so on. 

Words mean less than energy.  If someone is angry and they come with smile and nice words, I only pick up on the angry.  Because words often don't match, I can't trust my understanding of them. 


It is a comfort to have other people express this same communication variant - in fact our Gut Brains are becoming a little louder in speaking to our Head Brains in alerting us to danger or "things out of place" i.e. different.

 I would like to add this weird turn for me - although my Keeper and I have stopped the hostilities which were flaming around us over the years, exasperation still happens and I learned to forgive myself quickly for yelling, name calling, shouting lists of perceived failures, and this allowed me to forgive him quickly for his bouts of listing how hard our life is "now".

 Never thought I would let go a good grudge and yet I can forget what we were even quarreling about in minutes now. Painful memories are imprinted deeply and might be on the Last To Go list. People with PTSD can make some progress by just knowing those memories are sticking around because the body-mind has labeled them essential for survival and noticing them when they come back, thanking them for their service, and coming back to the moment.

 I think it is healthy to observe CGvr ranting and scolding, noting the person is not taking enough care of themselves, and forgetting it.




Posted: Saturday, January 2, 2016 9:47 PM
Joined: 9/12/2013
Posts: 3608

what it means to be abandoned.

 "In a survey of 300 people affected by dementia, the charity also found that 64% of those living with the condition felt isolated from friends and family following a diagnosis.The Alzheimer's Society is calling on people to make a positive New Year's resolution to spend time with people with dementia and help them take part in activities they enjoy to keep connected."


 I may rely on kindness of strangers and random conversations.

Had wonderful experience at swimming pool. Met a man there who had fallen years ago 20 feet onto  cement and needed to exercise in pool because of rods and plates. We just started chatting, he worked in a local mine as a smelter and had been in merchant marine.

Just in case I got weird I told him I had ALZ and needed to exercise. He said he loved talking with me and joked with me during my hour in pool.

Same day a 3 year old girl came with her parents. very verbal happy child, she waved to me and I waved back. She asked my name, I said, "well, I am a Grandma." Her eyes got big, her hands went to her mouth and she said "REALLY!?" Her parents almost cried it was so fabulous, so I was in with her for some time too. She must have thought I was like a found Grandma aside from her regular 2!

It is not just me that feels abandoned and isolated at times. Other than church my husband has no time with friends and rarely sees his own children. He is also going to pool and health club but is not as good at casual conversation as I am. I feel for him and worry about the toll it is taking on him.



Posted: Sunday, January 3, 2016 9:16 AM
Joined: 12/2/2015
Posts: 1018

I think it takes a superman or superwoman to find anything good to see about being a person with Alz or the caregiver. Positive attitude is good to have, but really! This whole thing sucks to high heaven. It is garbage for the person who has it, and it is garbage for the caregiver. What I have found somewhat surprising though is how little so many people seem to know about Alz and the overall situation at home for the Alz person and the caregiver. They seem to think it Is only a memory issue, and so long as a person can walk and talk they don't think it is such a big deal, other than they want nothing to do with it. For me, the memory part is the least of my concerns. It is everything else that makes Alz suck so much. I can live just fine without memory. But behavior issues, loss of focus, agitation when outside the home, inability to take any stressors or sensory bombing, and all of the other stuff is what scares me the most. Knowing that I will take such a toll on my wife scares me and bothers me, so much so that I intend to move into a facility when I reach a point of needed 24/7 observation, supervision, or help to avoid something really bad happening. I don't want my wife to live that way, and I don't want to live that way. But if I have to live that way, then I want it to be surrounded by folks who are being paid to provide the best care possible. I'm lucky in that we have the money, but most folks don't. Hell, I don't really know what I'm going to do. I'm just rambling on. I was awake most of the night worrying about things. My wife and I spent at least 20 minutes this morning discussing (maybe aguing) over whether the ceiling fan in our vaulted ceiling room was going clockwise or counterclockwise. Of course, I was wrong, but it took forever to convince me of it. I wanted to help recuculate heat some in the morning, thus which way the fan blows some say makes a difference, but less so with a vaulted ceiling. Two nights ago, we were with two of our best friends. The husband is both a doctor and a lawyer. He knows of my problems, but we are not telling folks until I get my supercharged evaluation at the big time place in early April, but it is clear as can be that I have had major problems for years now, only getting worse. My friend the doctor-lawyer clearly had no idea about Alz or even dementia. He's a urologist. It just bothered the heck out of me that he didn't understand that memory loss is just a small part of the big picture. As for friends, we shall see, but I can say that over many years I have noticed how friends vanish for other people when they have serious problems. My mother was a saint in terms of always helping everyone. When she had Alz, none of her so-called best friends ever came to see her when she was in assisted care or the memory place. Yes, they were 30 miles away because we moved her to where we were living. I was there everyday, but I truly thought or deluded myself into thinking that she was better off with professionals than in our house. Of course, she actually believed that she was still living at home the whole time. Should I have done more, I don't know. I just did what I thought was best at the time for everyone concerned, my wife and son and my mother and me. It is cold and windy outside right now, and I think I'm going to go for a walk around a nearby lake where it is really beautiful. The wife is at church, which seems to help her but does nothing for me. Happy Sunday.
Posted: Sunday, January 3, 2016 9:49 AM
Joined: 5/20/2014
Posts: 4408


That's right, if we're upright, look okay, sound okay then we must be okay in the eyes of others! This is especially true if you don't have stains on your clothing and are not mumbling to yourself. There is so much dimwittedness surrounding the perception of dementia. It can be shocking when the realization sets in as to how little people understand. Hang on! There are more shocks to come but you are here among us who understand and know how this feels. Enjoy your walk at the lake!

Posted: Sunday, January 3, 2016 9:57 AM
Joined: 9/12/2013
Posts: 3608

Bob - how weird I spent awhile trying to figure out if the ceiling fan was going clockwise or counter clockwise a few nights ago because I want heat pulled down during winter.

I have been thinking about you. I wonder if there is a retired attorneys assoc near you. it may seem preposterous to suggest, but with your background and knowledge (which you will likely maintain for a lot longer than you are imagining right now) there may be a place for you to work. One on one mentoring, legal aid, reaching out to other attorneys in the same boat...

A local attorney specializes in Elder Care was very helpful to me and eager to learn about ALZ needs. He mentors and teaches. He is still working at 68 with no plan to retire. You must have similar contacts.

I think you might ask your wife what she would like before you decide too much on her behalf. You are a musician? You might look into starting a group of other musicians to jam who have dementia, or who don't mind that you do.

  you are sharp, interesting, and well spoken. You are not ready for nursing home or assisted living yet... it may be a long time before you are and making that time more fun is possible.


Michael Ellenbogen
Posted: Sunday, January 3, 2016 10:07 AM
Joined: 11/30/2011
Posts: 4463

Bill I think you can find some good in the diagnose if you open up. It’s not all good but there is some. You need to think a bit differently. Don’t allow it to win you over.


Posted: Sunday, January 3, 2016 10:25 AM
Joined: 12/2/2015
Posts: 1018

BAck from the cold. All wonderful comments, and I take them all to heart, particularly the part about letting my wife make her own decisions. There are two of us in the boat. Oh, on the legal side of things, I would not go back to running with the dogs again if you put a gun to my head. Great idea, but I've had it with the legal world, for a long time now. Again, I really appreciate the comments. As for the fan, I still think it is going in the wrong direction, but I'm sure my wife is right. Regardless, I don't want to expend any more brain cells on the point. Our heating bill here in the condo is a fraction of what we used to pay in our house, and I am so glad we got that thing sold this past summer. I'm also here to say that it was COLD walking around the lade. It is a large lake with a narrow pass coming down from a mountain top, and the wind is huge on one side of the lake. I'm going now in search of a better hat on the internet.
Posted: Sunday, January 3, 2016 10:30 AM
Joined: 9/12/2013
Posts: 3608

The FAN -

I laid down on floor, looked up, imagined a clock face and got it going in right direction.

I think I did.  ha!

You and Michael could GET PAID to travel. Just thinking.

Posted: Sunday, January 3, 2016 10:52 AM
Joined: 12/2/2015
Posts: 1018

alz+ wrote:

The FAN -

I laid down on floor, looked up, imagined a clock face and got it going in right direction.

I think I did.  ha!


 There must be something in the female genes. I did exactly what you said many times this morning, and it looked different. But I just did it again, and I think I saw the fan going like my wife saw it, and like you just saw it. Heck, I can do the clock test just perfectly on the mini test. I guess they should have asked about the hands instead of the numbers. Strange is all I can say.

Michael Ellenbogen
Posted: Sunday, January 3, 2016 1:14 PM
Joined: 11/30/2011
Posts: 4463

Bill don’t underestimate your abilities in reference to your legal work. I was once a high level manger and had to deal with all the politics and crap that went with the job. I had to be careful to not offend or I would lose my salary. I fond my new job in advocacy. I can say whatever I want and to however I want. While I no longer get a salary I also don’t need to worry about pissing someone off. It is a good feeling because you can really get things do when you don’t have those restraints. I am respected by all the world leaders in the dementia field today because of it. I am always dealing with lawyers who do pro bono work to help this cause. In fact I am working with some now on great mission. I am not sure what type of legal you practiced but I bet there are many ways you could apply it in a way that can help further this cause. More then happy to talk about it if this is of interest. I have always been a out of box thinker and I always look for ways to challenge the existing system to make it better.


Posted: Sunday, January 3, 2016 7:51 PM
Joined: 4/25/2015
Posts: 406

Hi, all,

I'm sorry, I feel a bit like I'm interrupting ... Have been on the caregiver's forum for awhile ..and saw some referrals to posts on other forums that made me feel like I'm missing out on a lot by sticking to just the caregiver's please excuse me.

I am enthralled with the article about Beatitudes..and all the discussion. I live in Phoenix . I care for my 91 year old Mom at home. Not sure if we will ever need a facility ...but my ears perked up . Beatitudes  also has what they call " Beatitudes at Home" where one Of their caregivers come to your home and for part of the day takes your LO to Beatitudes for activities.... The small article I saw spoke about yoga and music. I also saw just watched the movie Alive Inside and looked for facilities in AZ that were using the techniques in the movie, and, yes, Beatitueds is on there. 

I have always thought of Facilites as scary...mostly what I have experienced when visiting  someone in one. It warms my heart and gives me much hope that there are such improvements..some in my own back yard.

Thanks for allowing me a peak at a great article and thread , 



Iris L.
Posted: Sunday, January 3, 2016 8:51 PM
Joined: 12/15/2011
Posts: 18519

BillBRNC wrote:
But behavior issues, loss of focus, agitation when outside the home, inability to take any stressors or sensory bombing, and all of the other stuff is what scares me the most. 


I experienced the above, except behavior issues, before I began Exelon patch and Namenda, and for about a year or two after beginning.  Now, I mostly don't have those issues.  I don't remember if you are on medication, Bill.  You might consider it, if you are not.

I had a lot of anxiety when away from home.  I thought I had agoraphobia.  But I did not. I psychoanalyzed myself and got to the root of my anxiety.  I was afraid, if something happened to me, I would not know how to deal with it.  Now that I know, I seldom experience anxiety.  

I think we all experience anxiety and agitation, and learn on our own how to deal with it and ameliorate it.  Certainly professionals have nothing for us.  They are clueless.  Don't waste your money or time.

I have a ceiling fan too.  I never noticed a difference in the temp of the room, whether clockwise or counter-clockwise.

Arguing about things like that use up oxygen which could be going to your brains.

Iris L.

Posted: Monday, January 4, 2016 6:35 AM
Joined: 9/12/2013
Posts: 3608

Bill (and everyone) thanks for not mentioning I call Bill "Bob"! ha!

Sandy (?) from CGvr board - I see your photo many times when I come to check n boards and always loved those 2 people in it!

Lucky for your Mom that you are open to making her life more fun.

And for you. I do not read CGvr boards much but what ever you learn and share will elevate the lives of so many others.

You and your Mom are so lucky. Love you all.

Posted: Monday, January 4, 2016 8:21 AM
Joined: 4/25/2015
Posts: 406


Thank You for the kind appreciated,


Posted: Monday, January 4, 2016 9:28 AM
Joined: 7/24/2015
Posts: 3020

Well, *digs toe into dirt*...I find good things about Alz all the time. 

However, how you view (and the experience that follows) 100% a matter of perspective.  And so the same adage applies, if the view sucks, step over to a different window...simple as that.

First of all...reality is reality...independent of whether you like it or not.  In fact, reality could care less what you think about it.  The sky is blue.  I am sure some people could be really offended by that...but it is blue just the same.  Simple logic...if I get all upset at the sky being blue - I will be miserable?  Do I want to be miserable?  No.  Indeed, life is infinitely WAY too short (esp if you have this disease) to spend even one more second than you have to being miserable.  So, if I don't want to be miserable, I have to change my point of view. 

Some good things about the disease.  I have a support group now.  Indeed, I have a few.  And I have made some amazing wonderful new friends whom I love to no end. 

I have an Association...and I got to go on the walk.  Now, that might not seem like much to most people...but when you consider that I suffered for 7 years with a "mystery illness" and nearly lost my ability to is a big deal to me. 

I have a diagnosis...and an explanation for why things are so hard.  Again, from the perspective of years of shrugs and I don't knows...and no reason for why I was getting worse - it is really nice to know. 

I have a medicine that helps me function better.  OMG, that is thrilling in an of itself.  To have something, anything that have no idea.  That goes for the physical issues too...went from barely walking to now can run up the stairs, and cam walk around the block.  I don't think my heart will ever stop singing inside from that.

I have a host of wonderful workers who help me do all kinds of things...and yup, I love the too. 


Did you know, doctors take you far more seriously when you have a diagnosis?  That is pretty cool too.

I was dying anyways...only now I know what is to blame.  Again, it is all a matter of perspective...if you spent years, literally years, getting worse...knowing you are dying...and having nothing to pin it to...that definitely sucks worse than knowing what it is. 


After a lifetime of service to others...I have to say, that their is such a beauty and grace and love in witnessing others do for me, as I used to for others...that I never would have known, if not been o the receiving end.  I *LOVE* seeing others hearts that way...*LOVE*...might even be the single most beautiful thing this world has in my opinion. 

And, I have to say, I find that there are a lot of spiritual lessons involved in dementia, like that one...too. 

There is so much work to be done, true...but that also means that there is so much opportunity to STILL be of use.  And the whole fact that the "normals" leave it entirely up to us...couldn't be more perfect. Because that means, even in stage 6, I have a chance to be of use...without having one of them rush in to take over.  Not that I wouldn't appreciate their help and support...but I dig the opportunity all the same.  And, it has the side effect of evoking neuroplasticity. 

If all things in my situation were not exactly as they are, I wouldn't be getting what I am getting. 

Not that life is all peaches and cream, mind you...just that there is a lot of good to be had on the way out of this life...and I, for one, am grabbing all I can of it.  Again, knowing that it is all a matter of choice of windows to view me, life is just way, way, way too short to waste even one second of it being miserable. 

If nothing else, this diagnosis should be a huge (loud) wake up call, and kick in the make the most of what you have left.

As to spouses...people say the long goodbye like it is a bad thing.  But imagine if you two fought one day and one of you died suddenly in a car crash.  You'd never have the chance to say sorry.  You'd never have the chance to say how you really felt...or to make right.  Dementia and Alzheimer's gives you that time and opportunity. 

Alzheimer's gives you time...that in itself is a huge blessing and gift.  Time to make what you will of.  Time that YOU get to decide how you will use...or squander...or piddle.  I *LOVE* that it gives me time. 

And it is the same exact lesson we each had our whole make what you will with what you have.

But is true...we each have our hard season, where we have to come to terms with it...and make peace with it...because it isn't going away.  Do what you can to set yourself in the best possible position.  And live as fully as you can, doing what you are most passionate about. 

I also don't see it as having to be "so-bad" for caregivers...and I know that is a bit anti-the established agreement.  But I have been caring for my mom for the last 10 years, and I love it.  Indeed, it is the highest act of love I have experienced...and I feel blessed to be a part of it. 

Peace.  <3

Posted: Monday, January 4, 2016 9:51 AM
Joined: 7/24/2015
Posts: 3020

PS: You are not at all out of place SandyJm, everyone is welcome here... there is much to be had here.  Always feel free to jump in, ask questions, explain your point of view or experience...or, omgosh, help us out.