Go Figure

Testimony on Family Caregiving Initiative by The Honorable Donna E. Shalala
U.S. Secretary
U.S. Department of Health and Human Services

Before the Senate Special Committee on Aging
March 23, 1999


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Good Morning, Chairman Grassley, Senator Breaux and Members of the Senate Special Committee on Aging. Thank you for the opportunity to testify on one of the most important domestic issues facing our nation: long-term care for our elderly. I am joined today by two members of my team, Dr. Jeanetter C. Takamura, Assistant Secretary for Aging, and Dr. Richard Hodes, Director of the National Institute on Aging (NIA). We greatly appreciate your bipartisan leadership on the elements of the President's long-term care initiative, particularly the Family Caregiver Support Program.

In fact, before I begin, I want to recognize the special leadership role that this Committee has played in bringing greater focus and awareness to the many health and lifestyle issues facing our nation's senior citizens, including Alzheimer's disease and related disorders. I know the members of the audience and those they represent all across America join me in expressing our deep appreciation to you Mr. Chairman, and Senator Breaux, for the Committee's fine work over the years.

Mr. Chairman, when the late Stanley Kubrick made 2001 A Space Odyssey 30 years ago, his vision of the future was one of revolving space stations and rebellious computers. Now that 2001 is only two years away, we can argue about how close Mr. Kubrick came to the truth.

What we cannot argue about is the changing face of America over the next 30 years. For all the images we see in movies and television of a nation that is faster, younger and healthier, the fact is we are heading for a world no demographer has ever seen before. And the color of that world is gray. By the year 2030, the number of persons in our country 65 and older will double. And people 85 and older will be commonplace.

These changing demographics are no cause for alarm. But they are cause for action. We want life not only to be long - but good. That means having the tools we need to care for those ravaged by Alzheimer's and other chronic or disabling diseases. This will be one of the central challenges of the 21st century - to make dignity and comfort for the elderly as much a part of our national consciousness as education and safety for our children.

Let me emphasize that millions of families across America already face this challenge. In fact, family members provide most of the care for older persons who are no longer able to manage on their own. So one of the reasons I am here today is to convey the Administration's strong commitment to the families and caregivers of people in need of long-term care. But we need to do more than stand with them. We need to help them. That is the purpose of the President's long-term care initiative. To give these families - and the loved ones they care for - the support, guidance and financial assistance they desperately need.

Let me be clear: this initiative is not designed to just help older Americans. It is part of a much broader strategy to help Americans of all ages who are disabled. And this initiative is not just about money. It is about providing comprehensive assistance to family members who provide and receive long-term care.

That means the hundreds of thousands of Americans living in communities across our country, struggling to raise children, hold down jobs and protect their elderly parents. Let me give you an example of the type of person I am talking about. Frank is an older gentleman from the Chicago area. His wife is in a local adult day care center three days a week. Those three days are Frank's respite. They are a time of rest and relief - and also a time to buy the groceries and other supplies he needs to hold his family together. What Frank does is a 24-hour-a-day, seven day-a-week expression of love. At first the burden was manageable - and the fulfillment of a promise he had made on his wedding day. Now Frank says that although the added stress and exhaustion means he might end up going before her, "at least my conscience will be clear."

What about our conscience? Frank and so many others like him deserve more than our admiration; they deserve our support. Mr. Chairman, 95 percent of frail older Americans who live in the community and need long-term care receive unpaid assistance from informal caregivers like Frank.

Research indicates that informal support for caregivers has a significant impact on the emotional well being of caregivers, as well as in delaying the need for nursing home services. A recent NIH study found that adult day care not only reduces caregiver stress, but delays the institutionalization of the care recipient. Another recent study indicates that counseling and support for caregivers of people with Alzheimer's can keep the care recipient out of a nursing home for an additional year.

Research also tells us that providing care to older persons exacts a heavy emotional, physical and financial toll. Almost three-quarters of informal caregivers are women. Many are older and vulnerable themselves, or are running households and parenting children. In fact, half of all caregivers are over 65 themselves. That means their own health is at risk. They suffer high rates of depression because they are emotionally strained. And not surprisingly, one third describe their own health as fair to poor. Many caregivers have had to cut back on their hours of work to provide elder care for their loved ones. Today, two-thirds of working caregivers report conflicts between work and caregiving that require them to rearrange their work schedules, work fewer than normal hours, and/or take unpaid leaves of absence.

The National Family Caregiver Support Program

Mr. Chairman, long-term care does indeed take a huge financial and emotional toll on the family and friends who provide most of this care. Because of its complexity, however, no single policy can "solve"this problem. Thus, the President in his FY 2000 Budget has proposed a multi-faceted initiative to provide immediate assistance with long-term care and help prepare for what will surely be one of the great challenges as the baby boom generation ages.

First, the President's long-term care initiative includes $125 million per year for the National Family Caregiver Support Program to provide assistance to people caring for older family members.

Through the established networks of the Administration on Aging (AoA), this program will enable states, working with area agencies on aging, local service providers and consumer organizations, to create a community-based infrastructure of support for family caregivers. State offices on aging would be expected to put in place at least five important program components to meet complex and diverse care needs. These components include:

Providing information to caregivers about available services;
Assisting caregivers in gaining access to specific services;
Individual counseling, organization of support groups, and provision of caregiver training to help families make decisions and solve problems related to their caregiver roles;
Respite care to enable families and other informal caregivers to be temporarily relieved from their caregiving responsibilities; and
Providing supplemental long-term care services, on a limited basis, to complement the care provided by caregivers.
Our proposal also includes competitive grants for the development of innovative solutions to specialized caregiver problems. The results from these demonstration projects and applied research will be put into practice through ongoing state programs. This will lead to an understanding of best practices; in other words, which programs are the most effective in helping caregivers and care recipients in the home, in the community or on tribal reservations.

Second, the President's initiative includes a targeted $1,000 tax credit for people with long-term care needs or their caregivers. For some families, the tax credit will help to offset some of the direct costs of long-term care, such as adult day care or home health care visits. For others, it will help offset indirect costs such as unpaid leave taken from work.

Third, the President's initiative includes an expansive educational effort to inform all Medicare beneficiaries about long-term care options. Since most people who develop long-term care needs are Medicare beneficiaries, Medicare can be used to provide information on the limitations of its coverage, alternative sources of long-term care services and financing, and how best to choose the most appropriate options.

Fourth, the President's proposal also calls for the federal government to offer private long-term care insurance at group rates to federal employees, annuitants and their families. Participants would be responsible for paying the full amount of the premium and the market leverage of the federal government is expected to save an estimated 15 to 20 percent from the cost of individual long-term care policies. It will also set an example for other employers.

Fifth, our FY 2000 budget would expand access to home and community-based care services to people of all ages with significant disabilities. Under this proposal, states could provide Medicaid coverage to people with incomes up to 300 percent of the federal Supplemental Security Income level who would be eligible for nursing home care but who would prefer to live in the community. This new Medicaid option will make eligibility for nursing homes and community-based services more comparable - and will eliminate one of the sources of Medicaid's "institutional bias."

Sixth, the President's budget provides $100 million in competitive grants to enable existing HUD elderly subsidized (Section 202) projects to convert some or all units into assisted living in order to provide the additional services that many older Americans need to continue living as independently as possible. Finally, the Vice President has started a series of forums on family caregiving, raising important issues and educating people about their options.

Mr. Chairman, there are adult children in this country who - day in and day out - live in terror that their mom or dad will wander off or hurt themselves because of Alzheimer's or a similar disease. We want to keep families from having their lives wracked by stress, worry and despair. I speak from some personal experience. When I was home in Cleveland over Christmas, my cousins told me about caring for one of my aunts who has Alzheimer's disease. My cousins rush home from work in the middle of the day, every day, to make sure that their mother gets the help she needs. They are loving. But they are stressed. And they need help. Unfortunately, there is little help for them because they are middle income and do not qualify for Medicaid.

Frankly, my cousins' case is just one example of many. We know that the lives and needs of caregivers are varied. We know that there is no "one size fits all"answer. A complicated challenge requires a comprehensive solution. Overall, our initiative is a pragmatic response to the growing problems of long-term care. It provides comprehensive assistance, not just financial assistance, to those requiring or providing long-term care. Our proposal is an historic first step that represents a compassionate response to what I have already said will be one of our nation's most compelling problems in the 21st century. We must, as the President has said, "give care to caregivers."The President's initiative helps to meet that challenge.

The Department's Alzheimer's Initiatives

Alzheimer's disease exacts a heavy toll on its victims, their families, and our health care system. Each year new research helps to sharpen the effectiveness of care for people with Alzheimer's disease. Nevertheless, the nearly four million people in the United States who have Alzheimer's disease, or related disorders, is expected to double in the next 20 years. Each victim will eventually require full-time care. This dreaded disease affects patients, their families, caregivers and society. We must continue to evaluate the various models of care for people with Alzheimer's and models of support for their families so that successful approaches can be given broader implementation.

That is why I have directed the National Institute on Aging, under the leadership of Dr. Hodes, to step up its efforts to study Alzheimer's disease and related disorders. The NIH Alzheimer's disease prevention initiative is being developed to expedite our progress in delaying or preventing the onset of Alzheimer's disease. In collaboration with other federal agencies and the private sector, this initiative will foster new approaches to basic biological and epidemiological research; increase focus on drug discovery and development; improve methods for early identification of people at increased risk of developing Alzheimer's; and facilitate testing of possible new treatments in clinical trials. The initiative will also develop strategies for improving patient care and alleviating the burden of caregiving.

Just last week NIA launched a nationwide treatment study targeting people with mild cognitive impairment, also known as MCI, a condition characterized by memory deficit, but not dementia. Accurate and early evaluation and treatment of MCI individuals might prevent further cognitive decline, including the development of Alzheimer's disease. This study is the first such Alzheimer's disease prevention clinical trial carried out by NIH, and will be conducted at 65-80 medical research institutions throughout the United States and Canada. Other trials are in the pipeline, many of which will piggy back cognitive studies onto ongoing trials for the treatment or prevention of other conditions.

For those who now have Alzheimer's disease, research and information efforts are being intensified to help alleviate part of the overwhelming patient and caregiver burden, with special emphasis on the needs of a diverse patient population. The NIA is also taking steps to make information about Alzheimer's disease clinical trials more accessible to the general public. As part of a NIH-wide initiative on all major clinical trials, the NIA's Alzheimer's Disease Education and Referral Center (ADEAR), in collaboration with the Food and Drug Administration, is developing a database of ongoing Alzheimer's disease clinical trials. When complete, both government and commercial trials will be represented. The database will be accessible on the World Wide Web, and information will also be available through trained information specialists of the ADEAR toll-free hotline (1-800-438-4380).

The Administration on Aging's Alzheimer's disease demonstration grants will help states to take advantage of research findings and demonstrate effective models of non-medical care for people with Alzheimer's disease. The demonstration programs have proven to be very successful in reaching out to, and providing support services to people with Alzheimer's disease and their family caregivers. Special attention is being paid to minority, low-income and rural families. Building on the approach instituted by the Health Resources Services Administration (HRSA), AoA supports states in developing model practices for serving people with Alzheimer's disease and their families. Of the 15 grantees, 12 are state offices on aging, two are state health departments, and one is a state mental health agency. Nationally, almost 150 agencies are involved in the program. State and local Alzheimer's Association chapters are active in all of the projects. Approximately 8,000 families have been assured that their loved ones with Alzheimer's disease are able to maintain the highest possible quality of life.

I also want to note the Administration on Aging's highly successful national toll-free Eldercare Locator (1-800-677-1116). The Locator provides important information and assistance to long distance caregivers who are seeking help for their loved ones. We have found that many of the individuals who call our Eldercare Locator are caregivers for family members with Alzheimer's disease.

Let me close, Mr. Chairman, by saying that the need for support for family caregivers has never been greater. Caring for our elders has become a deeply emotional, sometimes heartrending matter for millions of families across America. The number of those families will only grow - as will the need for caregiving resources. The new century will bring longer life spans, more changes in family structure, more women in the work force, more geographic mobility and more delayed child rearing. We believe that the President's long-term care initiative, in particular the National Family Caregiver Support Program, offers an important first step towards ensuring that American elders and their families are able to enjoy a good quality of life, optimal health and access to critical supportive services.

Chairman Grassley, Senator Breaux, members of the Special Committee on Aging, I greatly appreciate your leadership on long-term care and other issues affecting senior Americans. I look forward to working with you to meet the challenges and opportunities of the gift of longevity. We have much to accomplish and many families to help. They are our friends, our neighbors, our fellow citizens. The time to offer them the supportive hand they need is now.

My colleagues and I would be happy to address any questions you might have.


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Reflection

Took a little time from the blog to give life a deeper look, deal with this gritty recession, look for money under rocks (smile), look for alternate methods of care (daycare to begin on Monday) I would say I am jumping for joy---however we approach this new cycle in life with great hopes that she will find friends and entertainment among her peers for 8-hours a day.
Over the past 2 weeks or so I have not had the mental stamina to post here---my brain power went exclusively to dealing with our mounting bills (due substantially to providing care for my mother in law)....
My Mil has property which is in another state (Georgia we're in Texas) which is not being well managed and is becoming a liability instead of an asset.
Family members for three years abused, exploited, and allowed my MIL to abuse anti-psychotic drugs, subsist on tv dinners, and remain afraid and trapped in a violently isolated environment of mental ward confinements, violent conflicts with others, and malnourishment/dehydration are still throwing stones at my family but are without solutions or even a genuine approach to providing long term care for their mother or manage her property to her benefit and the benefit of those who are responsible for her day to day care.

Caregivers Health

How important is staying health for the caregiver?
I ask this because I myself neglect my health on a daily basis--- overwhelmed the pressures of managing a household (2 small children and elderly AD person). I simply don't have the time---I hope relaxation is therapeutic as that is the only type of relief and respite I get.
I do get a full retinue of exercise each day as I perform a paper route that includes about a mile of walking and going up and down stairs.
I am still concerned with my overall health and I advise people who have caregivers in their homes to be very conscious and considerate of the health of those we rely on to provide care for our loved ones.
klcouncil

Family Unit

It takes a unit to provide insight care---family memebes must work together for the benefit of the whole...caring for someone can not become the sole focal point of caregiving. Meaning that life has to have balances to avoid becoming overwhelmed by our duties to provide for our family.

Always reassess how you manage time and attention----as always never overlook self---considering that you well could be the linchpin of the family whose providing care.

Support

In being the primary caregiver of my mother-in-law what I find is the hardest part of this experience is getting her children (my wife included)to elevate their level of insight regarding the care of their mother.
It is essential for family members to reinforce good caregiving by proving to the caregiver---that they (family members) are committed to providing care---
this entails cooperation with the insightcaregiver, listening to the concerns and the instruction of the insightcaregiver, as well as providing the insightcaregiver with all reasonable support.
This area of support will be expanded on in future posts---the support system is essential; in keeping families and insight-caregivers on the same page (in the book of caring) and to prevent premature burnout in regards to caring for someone.

Insight

Getting a person off of anti-psychotics is essential to restore dignity and enhance end life care.
No one is functional on drugs used to control (so-called behavior problems in elderly people)-any caregiver who claims success at the expense of medicating people to death on hard drugs to make their job easier is outrageous. We cannot continue to give feeble-minded or elderly people powerful anti-psychotics.
I would suggest that the people who feel drugs help or slows down the process of mental aging consider this---
My mother-in-law could not talk or walk straight under the influence of anti-psychotic drugs (she’s also been certified as totally incompetent by a neurologist 11/2007)---
After being off anti-psychotics for seven months my mil can spell, write, do simple math, simple problem solving (interesting). Have a lot of young children’s workbooks on hand---in my mil case math books seem easiest for her to concentrate on.
The fact is she has more mental capacity since discontinuing anti-psychotics---yet the corporate care giving industry is telling us anti-psychotics are beneficial for our loved ones’ minds---this is absolutely false and may well be criminal.
I challenge any caregiver to bring their chemically induced patient to a neutral location, I will bring my Mil, and she will out perform their patient in any cognitive capacity.
My question is how do our elderly relearn the things they have known all their lives---and how do we retain our own mental capacity as we age.

Klcouncil
Thx fo carin

Insightcaregivers Menu

Many caregivers struggle with daily feedings of the ones they care for. Getting the ones we care for to eat is important---especially when they are anti-psychotic drug free---the right food can enhance memory and affect mood.
Under this post I focus on food, menu, and ways to convince loved ones to eat right---
For instance the person I care for refuses to eat dark green/leafy vegetables. No greens, spinach, broccoli, cabbage etc
We have found one method that works---feed fruit, juices, nuts, whole grain bread, and a small snack (sweet) throughout the day. (No meals)
Then feed one big meal around 3pm include two or three servings of vegetables on the plate (there is an options for a later meal around 7pm usually veggies and fish)---small portion of Fish/Meat (essential sources of b6 and b 12)---you can even add bits of meat to the veggies to make them more appealing to the one cared for.
However, never resort to allowing old people to live on junk food, can goods, or fast food (especially if they are on anti-psychotics drugs). Pay close attention to how a person responds to the food they eat---keep diet and feeding stable as possible.


klcouncil
thx fo carin

Hygiene @ Home

Young children and old folks living together is a real task. The main thing is hygiene for all family members---the washing of hands, changing toilet paper, soap and towels---those are a few of the basics. Make sure children learn the basic tenets of good hygiene

1. avoid contact in public
2. don't lean or wallow on items (furnishing shopping carts etc) in public
3. inspect your drinks in schools for dates of expiration----check the cartons or bottles for leaks----
4. check the bottom of the cartons for discoloration (if discolored discard)
5. use restroom carefully

Male moms and pops relearn the one's they taught us---

1. always wash hands(always)
2. check bathroom after usage
   
3. eat behind no-one
4. bathe regularly
5. clean mouth and dentures nightly
   

These tents are hard to keep at times----never-the-less we try and follow them.
Protecting the health/hygiene of the family is just as important as providing security for the family.
klcouncil
thx fo carin

relaxed living

These steps can help relax people with AD:

Walking on daily basis

Listen to calming music at sleep time

Pet dog

Keeping environment relaxed and focused on caregiving

klcoucil

Anticholinesterase Inhibitors Drugs

Dear Kenneth,

Thanks for contacting me. I am pleased to hear your MIL is better after having stopped her antipsychotics. I am not sure what Namenda is, but in my experience the anticholinesterase inhibitors drugs can make people very agitated too. There has been some publicity about this with the recent BBC Panoram programme, and i hope fewer people like your MIL will get started on antipsychiotics in the future.

Dr Joanna Moncrieff,
Senior Lecturer,
University College London,
Department of Mental Health Sciences

Comment by Sandra - December 4, 2007 at 9:33 am

My deceased father who had mild dementia was put in rehab for pain control for a compression fracture. The SMF put him on resperidol, zyrexia, along with MS contin for pain, robinol, lexapro and nerontin. He went from alert and able to walk to on his own to unarousable in a chair within 48 hours of admission. He also developed urinary retention as a side effect and ended up being straight cathed and then developed a UTI. He lost 50 lbs. in 6 months. Oh, they also put him in diapers. He was too sleepy for PT and they would not discharge him as he wasn’t ready yet. Some meds were discontinued but his affect never came back. He had many set backs with 2 hospitalizations in between, but once we got him home, he had 14 months of good life at home before he died from an aortic aneurysm that ruptured due to being put on coumadin for afib. I was at the SNF every day to oversee his care. If I hadn’t, he would have never made it

Myth of the Chemical Cure

Joanna Moncreiff a London psychiatrist has brought moral charges against those of her profession who fail to admit that anti-psychotics are doing NO GOOD and in fact are causing brain damage in feeble-minded and elderly minded people who have been instructed to take these pills by doctors and caregivers.
Anti-psychotics cause side-effects equivalent to and greater than symptoms commonly associated with Alzheimer's disease. That being the case why are we relying on these drugs---instead of focusing on other (less intrusive) methods of health-care? Dr. Moncrieff has concluded that anti-psychotics almost triple a person's risk of dying prematurely.
klcouncil

Caregivers using insight and good vibe ideas

Anti-psychotic drugs used to treat (so-called symptoms of Alzheimer's) is a questionable practice.
Caregivers using insight and good vibe ideas---understand that the patients rights are paramount in caregiving. Using the less restrictive means necessary is an absolute prerequisite to good caregiving.
This entails detail orientated care---in order to provide this level of care a caregiver cannot rely on drugs to control and manage a patients attitude or behavior---
The caregiver must use other means to control and manage the patients which do not violate the patients human right to life.
Insightcaregiving keeps the patient in sight of the caregivers 80% of time care is being provided---there is constant presence, eye contact, reading, casual touching, (family setting ideal).

(As an insightcargiver here is an example of day therapy I perform:
Patient (un medicated) up in room (alone) making beds, already dressed when observed, dentures located and in (alone), glasses located and on (alone), walked downstairs to kitchen (attempted to wash dishes--stopped and advised to use soap---did not agree (felt not needed "I go can home and never come here again" ramble for 5 min.)(caregiver calmed down went to turn on heat)---patient sits at kitchen table---juice, banana(2),---bp checked and is (high 186/93 pulse 70)---given bp pill and OJ---reading flower book (normal)---used rest room and is now in family room sitting directly in front of caregiver and young girl---patient reading daily news paper (quietly)---now watching dvd with daughter...

The above is a daily passage from the life of a lady who was first diagnosed with, Alzheimer's in 2004 and went through 3 years of anti-psychotic drug use, anemia, urinary tract infection, homicidal and suicidal incidents, fall incidents, extreme aggression and agitation, confused wandering, hallucinations, endless rambling and self-talk---constant ER visits and mental ward confinements.
klcouncil

Texas APS Out of Control

In 2004 Texas Department of Adult Protective Services was found to need the following:
"APS workers need training.
APS workers lack knowledge and understanding of Alzheimer's effect on the patient and its impact on the patients family
APS does not follow through and does not provide feedback
APS like a black hole, they never know what priority was given to their report and what action was taken.
APS workers need managerial support.
Caseloads are overwhelming
APS is proprietary; they have control of clients and won't allow other agencies to help patients
Most services provided by APS are for clients with capacity and Alzheimer's patient do not have capacity
Need a local number for APS
APS needs a place to take clients who are out of control"
Out of control!
Dear Kenneth:

Thank you for contacting me regarding your experience with Adult Protective Services (APS). I was truly sorry to read of your difficulties.

I sympathize with your concerns, and I appreciate you bringing this matter to my attention. Because senatorial courtesy requires that Senators each be allowed to assist their own constituents, I have taken the liberty of forwarding your correspondence to Senator Steve Ogden, who represents you in the Texas Senate. You may also contact his office directly at (512) 828-5224.

I wish you a satisfactory resolution to your concerns and hope that you will continue to communicate with your elected representatives on issues of importance to you.

Very truly yours,
Senator Jane Nelson

cc: The Honorable Steve Ogden

My family has experienced APS lack of planning in regards to people without capacity---in my family's case the APS attempted to treatment my MIL as if she had capacity when it would help support the APS investigation, however they APS found that she was without capacity in regards to anything we have done. For example in 8/07 my MIL requested that my wife help get her life back---my wife agreed and applied for POA of her mother, the POA was notarized and consistent with Texas Law. APS in an investigation 8 months later claimed that the POA was invalid---however the APS had my MIL sign a privacy release in 10/07, the APS questioned my MIL as if she had capacity, and the APS documented information from these investigations as if my MIL had capacity. I agree APS needs uniformed overhaul in regards to Alz clients.

klcouncil

Razadyne

According the FDA "two randomized placebo controlled trials of 2 years duration in subjects with mild cognitive impairment (MCI), a total of 13 subjects on Razadyne(n=1026) and 1 subject on placebo (n=1022) died." http://www.drugs.com/pro/razadyne.html
My question is if so many more people died while on these mind drugs---why do we keep using them on the elderly?
Insightcaregivers must be aware of the dangers of these drugs period, not merely concerned with how these drugs are administered.
klcouncil

The symptoms for Dementia are the same as the symptoms for anti-psychotic drug addiction

The symptoms for Dementia are the same as the symptoms for anti-psychotic drug addiction

* Progressive memory loss
* Inability to concentrate
* Decrease in problem-solving skills and judgment capability
* Confusion, severe
* Hallucinations and delusions
* Altered sensation or perception
* Impaired recognition (agnosia)
o Impaired recognition of familiar objects or persons
o Impaired recognition through the senses
* Altered sleep patterns
o Insomnia
o Need for increased sleep
o Disturbance or change in sleep-wake cycle
* Motor system impairment
o Impaired skilled motor function (apraxia)
+ Inability to reproduce geometric figures
+ Inability to mimic hand positions
+ Inability to dress self
o Gait changes
o Inappropriate movements
o Other motor system impairment
* Disorientation
o Person, place, time disorientation
o Visual-spatial disorientation
o Inability to interpret environmental cues
* Specific disorders of problem-solving or learning
o Inability to generalize
o Loss of abstract thinking
o Impaired calculating ability
o Inability to learn
* Memory deficit
o Short-term memory problems (can't remember new things)
o Long-term memory problems (can't remember past)
* Absent or impaired language ability (aphasia)
o Inability to comprehend speech
o Inability to read
o Inability to write
o Inability to speak, without muscle paralysis
o Inability to form words
o Inability to name objects
o Poor enunciation
o Inappropriate speech; use of jargon or wrong words
o Inability to repeat a phrase
o Persistent repetition of phrases
o Other language impairment
* Personality changes
o Irritability
o Poor temper control
o Anxiety
o Depression
o Indecisiveness
o Self-centeredness
o Inflexibility
o No observable mood (flat affect)
o Inappropriate mood or behavior
o Withdrawal from social interaction
o Inability to function or interact in social or personal situations
o Inability to maintain employment
o Decreased ability to care for oneself
o Decreased interest in daily living activities
* Lack of spontaneity

Additional symptoms that may be associated with this disease are as follows:

* Swallowing problems
* Incontinence

Preparing for old age is an immediate challenge

Whose going to safe guard your health and mental well-being is the central question to living a full and long life.
Your primary concern is your mental health a healthy mind means a healthy body---people with little bodily functions (and good mental capacity) live fulfilling lives.
In contrast many people with healthy bodies lack good mental capacity.
When your body slows down your brain speeds up that is what the AGE of WISDOM teaches us---if we lose focus on that then we have lost focus on ourselves.
klcouncil
thx fo carin

Set a positive mood for interaction

Many caregivers have been taught to “set a positive mood for interaction” with the person cared for---they have been told that body language and attitude communicates your disposition stronger, than words?

Not only is that flawed its dangerous---especially if your loved one is on any type of antipsychotic drug, suffering current pain, or recent victim of abuse---

Anti psychotic drugs alter the mind to such a degree that they cause (heart failures, sudden death and open the door to every inflection imaginable).

A person under the stress of anti-psychotics cannot socialize, will not respond to touch, and cannot talk---with vision distorted by these drugs any form of physical body language is sure to trigger aggression.

Words the most useful form of caregiving to reassure people suffering confusion, other illnesses, and under the influence of drugs that we are there to help and that we are concerned with their needs. Words, music, sound breaks through the chemical clouds of confusion----helps them reconnect to the familiar sounds of family.


Thx fo carin
klcouncil

Aggression is often the result of a medical condition

Many health care organizations and caregivers claim that aggression is a medical condition.

Aggression=a medical condition?
Then our entire prison population is sick and prisons are merely hospitals for those who are aggressively sick.

Perfectly sensible people don't become aggressive unless under duress or attack. These people are caused to live in panic mode, due to noise, family disorder, lack of activity, quick bad food, and support instability---the caregiver is swamped by the sheer volume of having to provide someone with virtual minute to minute care for an indefinite period of life (what qualifies one for such a demanding task)?


Alzheimer's is a social disorder that warrants social caregiving… the social caregiving means the physical act of socializing (families who socialize together more due to ALZ disorder overcome more, have no stress related to the care (in fact social caregiving improves the caregivers stress level the caregivers are healing along with the people they care for), socializing induces good behavior on the parts of us involved in the caregiving process.
thx fo carin
klcouncil

Postmarketing Surveillance

Late breaking news---the Food and Drug Administration has ruled that treating people with Alzheimer’s/Dementia “increased mortality” in elderly people!
Drugs like olanzapine (Zyprexa), aripiprazole (Abilify),risperidone (Risperdal), or quetiapine (Seroquel) increase behavior problems in the elderly---These powerful “modifier” were not meant for the feebleminded or the forgetful.
Klcouncil8

FDA Public Health Advisory
Deaths with Antipsychotics in Elderly

Patients with Behavioral Disturbances

Insightcaregiving

This is an open charter please feel free to add your thoughts on what we can do to enhance private caregiving.

Insightcaregiving

The basics of insightcare- giving is transparency. We want other to see and know how we care for our loved ones.

This open display of caring protects the family in various ways;

1. It makes it easy for the community to identify that your loved one needs special care and to look out for her.

2. It reassures others in the community that you are committed to caring for our aging population and can be trusted to insure that the elderly are looked after of in the community.

3. Demonstrates to young people that it is a GOOD thing to be seen with the elderly in public.

4. It demonstrates our competency as caregivers.

5. It provides more freedom for the family and the uBeloved (persons cared for)

6. It gives us leverage in our cause to be respected and recognized as a bonafide element in the caring-health industry.

7. Insightcaring is in our nature it is what you do when others around you have to rely on you when they are sick---insightcaring has been taught to us by our grandmothers and grandfathers---

insightcaring lets you see what you are living for and not dying for

insightcaring extends life because you are interested in extending life---

insightcaring cooperates with all segments of the healthcare world, we keep daily(two hour) records, we inform and share advice, we research while caring, we interact with the mind doctors

8. Insightcaring holds the caregiver responsible for the care being provided.

It must be nonrestrictive for optimal care.

Banded From Caregivers Site For Caring

On Apr 11, 2008, at 10:56 PM, Jim Broede wrote:

Kenneth:

Just curious. Did the message board administrator Kelli Morehead give you a difficult time? Did she suspend you? Or tell you to stay away? Wouldn't surprise me. We've had some donnybrooks in the past on the message board. Some of the ladies have tried to get me banned. Without success. Some of the ladies, you know, have either been suspended for periods of time, or outrightly banned. They've even used profanity in addressing me. Even a 'fuck you.' Some of 'em are really out of control. Just imagine how they must deal with their patients. --Jim

Caregivers Daily Report

Daily report
MIL up and moving about in room with BG (Bg is 5)---
MIl talking quietly with bg---
appears to have good night sleep---
caregiver sleep in extra bed in room with bg noted no apparent problems---
classical music on troughout the night---
made little movement when lights went on during the night---
no bed wetting problems---
thx fo carin



daily report
MIl had a pretty day we did sweep detail---
she swept the next door neighbors drive and walk way....
beans rice and sausage for noon meal---
read baseball news golf news and a good part of the sport page...outloud...
no problems---cleaned kitchen together

551pm----

mil in back yard with kids eating ice cream no problems

long day wife wont be home until late---

Caregivers Insight

Posted April 05, 2008 11:24 PMApril 05, 2008 11:24 PM

I have been the primary caregiver of my 77 year-old mother-in-law for 8 months here is a before and after break down of her condition.
Before
1. Frequent hospitalization/mental ward confinements
2. Weight loss to the point anemia (weighed 89 pounds)
3. Dehydration resulting urinary tract infections
4. Extremely violent/attempts to cause injury to others (butcher knives, axe, fire)
5. Expressions of suicide
6. Isolation
7. No interaction
8. Antipsychotic drug abuse (allowed to self medicate)
9. Wandering episodes
10. Allowed strangers into house
After
1. Frequent doctor visit (general and neurological)(no mental health visit)
2. Weight gain (12 pounds)
3. Constant flow of juices/water (not a single infection)
4. Mild out burst easily redirected with attention (able to distract with kind words)
5. No suicidal words unless nursing home is mentioned
6. Never isolated (allowed very brief period of time alone)
7. Constant interaction reads daily and almost any subject
8. Only medication for high blood pressure (as needed)
9. Allowed to wander in enclosed backyard with dog/daily walks with caregiver
10. Not allowed to answer door