Warning for those with dementia about anticholinergics

Like Alzheimer’s Disease (AD), those with many other types of dementia have an imbalance of acetylcholine in the brain.  Anticholinergic drugs can be problematic for those with AD and non-AD dementias.

I saw this Q&A recently in my Dad’s AARP Health Care Options newsletter called fyi.



Ask Dr. Reed ([email protected])
AARP Health Care Options fyi (newsletter)
Fall 2006

Question:  My husband has Alzheimer’s disease.  His pharmacist told me that certain medicines could further worsen his memory problems.  Any advice?

Answer:  …You are wise to take steps to ensure that your husband’s mental status is not worsened by the effects of his medicines.  As we have mentioned in previous columns, many of us become more sensitive to medicines as we age.  As a result, a variety of medicines could produce unanticipated effects that could worsen mental status and overall function.

Alzheimer’s disease is characterized by low levels of a chemical that transmits signals between nerves called “acetylcholine.”  As a result, medicines called “anticholinergic” drugs that block the effects of this nerve chemical can be especially problematic for people with Alzheimer’s disease.  Unfortunately, these drugs are very common.  They include:

* Certain antihistamines such as diphenhydramine (Benadryl)
* Certain antidepressants such as amitriptyline (Elavil) and doxepin (Sinequan)
* Medicines for bladder problems such as oxybutynin (Ditropan)
* Muscle relaxants such as carisoprodol (Soma), cyclobenzaprine (Flexeril), and methocarbamol (Robaxin)

I always say to write down the name of every medicine that you or your loved one is taking, and review this list regularly with your doctor and your pharmacist…

Warning for those with dementia about anticholinergics

Like Alzheimer’s Disease (AD), those with many other types of dementia have an imbalance of acetylcholine in the brain.  Anticholinergic drugs can be problematic for those with AD and non-AD dementias.

I saw this Q&A recently in my Dad’s AARP Health Care Options newsletter called fyi.



Ask Dr. Reed ([email protected])
AARP Health Care Options fyi (newsletter)
Fall 2006

Question:  My husband has Alzheimer’s disease.  His pharmacist told me that certain medicines could further worsen his memory problems.  Any advice?

Answer:  …You are wise to take steps to ensure that your husband’s mental status is not worsened by the effects of his medicines.  As we have mentioned in previous columns, many of us become more sensitive to medicines as we age.  As a result, a variety of medicines could produce unanticipated effects that could worsen mental status and overall function.

Alzheimer’s disease is characterized by low levels of a chemical that transmits signals between nerves called “acetylcholine.”  As a result, medicines called “anticholinergic” drugs that block the effects of this nerve chemical can be especially problematic for people with Alzheimer’s disease.  Unfortunately, these drugs are very common.  They include:

* Certain antihistamines such as diphenhydramine (Benadryl)
* Certain antidepressants such as amitriptyline (Elavil) and doxepin (Sinequan)
* Medicines for bladder problems such as oxybutynin (Ditropan)
* Muscle relaxants such as carisoprodol (Soma), cyclobenzaprine (Flexeril), and methocarbamol (Robaxin)

I always say to write down the name of every medicine that you or your loved one is taking, and review this list regularly with your doctor and your pharmacist.

Caregiver Health (New Fact Sheet from Family Caregiver Alliance)

Family Caregiver Alliance has a good newsletter called “Update.”  The Fall ’06 issue has an interesting article on caregiver health, a topic we should all take seriously!  Here’s an excerpt:

“A large and growing body of evidence has revealed that providing care for a chronically ill person can have harmful physical, mental, and emotional consequences for the caregiver.  As families struggle to care for their loved ones, their own health is jeopardized.”

The article is about the availability of a Fact Sheet on this topic called “A Population At Risk.”  This link might work to get to the Fact Sheet:


This link might work to get to the article:


The article follows along with some highlights from the new Fact Sheet.


FCA Introduces New Fact Sheet on Caregiver Health
Update, a newsletter of Family Caregiver Alliance
Fall 2006, Volume 23, No. 4

A large and growing body of evidence has revealed that providing care for a chronically ill person can have harmful physical, mental, and emotional consequences for the caregiver. As families struggle to care for their loved ones, their own health is jeopardized.

This important public health issue has broad implications. Medical advances, shorter hospital stays, limited discharge planning, and expansion of home care technology have placed increased costs as well as increased care responsibilities on families, who are being asked to shoulder greater care burdens for longer periods of time. To make matters worse, caregivers are more likely to lack health insurance coverage due to time out of the workforce. These burdens and health risks can hinder the caregivers’ ability to provide care, lead to higher health care costs and affect their own quality of life as well as that of the care receivers.

FCA has introduced a new Fact Sheet discussing this significant issue. It describes the impact of caregiving on the mental and physical health of the caregiver, summarizes research from a variety of sources, and offers recommendations from a health and public policy perspective.

Studies indicate that caregivers:

  • suffer from high levels of stress and frustration
  • show higher levels of depression
  • may exhibit harmful behaviors
  • are in worse physical health than noncaregivers
  • may have increased risk of heart disease
  • have lower levels of self-care
  • may pay the ultimate price for providing care­increased mortality.

This new publication joins the FCA library of more than 60 Fact Sheets on caregiving issues, with many translated into Chinese and Spanish. All are available at no charge on the FCA website at www.caregiver.org, or send $2 for each copy to Family Caregiver Alliance, 180 Montgomery Street, Ste. 1100, San Francisco, CA 94104.


Excerpts from:

A Population at Risk
Fact Sheet of Family Caregiver Alliance
Fall 2006

Evidence shows that most caregivers are ill-prepared for their role and provide care with little or no support.

Caregivers show higher levels of depression.  Depressed caregivers are more likely to have coexisting anxiety disorders, substance abuse or dependence, and chronic disease.

Research shows that female caregivers (who comprise about two-thirds of all unpaid caregivers) fare worse than their male counterparts, reporting higher levels of depressive and anxiety symptoms and lower levels of subjective well-being, life satisfaction, and physical health than male caregivers.  According to one study, there is a dramatic increase in risk of mental health consequences among women who provide 36 or more hours per week of care to a spouse.

Caregivers suffer from high levels of stress and frustration.

Stressful caregiving situations may lead to harmful behaviors.  As a response to increased stress, caregivers are shown to have increased alcohol and other substance use. Several studies have shown that caregivers use prescription and psychotropic drugs more than noncaregivers.  Family caregivers are at greater risk for higher levels of hostility than noncaregivers.  Spousal caregivers who are at risk of clinical depression and are caring for a spouse with significant cognitive impairment and/or physical care needs are more likely to engage in harmful behavior toward their loved one.

High rates of depressive symptoms and mental health problems among caregivers, compounded with the physical strain of caring for someone who cannot perform activities of daily living (ADLs), such as bathing, grooming and other personal care activities, put many caregivers at serious risk for poor physical health outcomes. Indeed, the impact of providing care can lead to increased health care needs for the caregiver.

Caregivers are in worse health.  About one in ten (11%) caregivers report that caregiving has caused their physical health to get worse.
The physical stress of caregiving can affect the physical health of the caregiver, especially when providing care for someone who cannot transfer him/herself out of bed, walk or bathe without assistance. Ten percent of primary caregivers report that they are physically strained.  Caregivers have an increased risk of heart disease.  Caregivers exhibit exaggerated cardiovascular responses to stressful conditions which put them at greater risk than noncaregivers for the development of cardiovascular syndromes such as high blood pressure or heart disease.

Women who spend nine or more hours a week caring for an ill or disabled spouse increase their risk of heart disease two-fold.

Caregivers are less likely to engage in preventive health behaviors.  Caregivers’ self-care suffers because they lack the time and energy to prepare proper meals or to exercise. About six in ten caregivers in a national survey reported that their eating (63%) and exercising (58%) habits are worse than before.

Caregivers pay the ultimate price for providing care—increased mortality.  Elderly spousal caregivers (aged 66-96) who experience caregiving-related stress have a 63% higher mortality rate than noncaregivers of the same age.  in 2006, hospitalization of an elderly spouse was found to be associated with an increased risk of caregiver death.

“Understanding Difficult Behaviors”- recommended book

This post might be of interest to those who have loved ones with dementia — all of the LBD, some of the PSP, and some of the CBD (especially late stage) folks…

There are a couple of great books with practical suggestions on how to cope with Alzheimer’s Disease and similar illnesses. One is “Understanding Difficult Behaviors” by Anne Robinson, Beth Spencer, and Laurie White, 1989, published by Eastern Michigan University.

You can purchase the book at local offices of the Alzheimer’s Association, which are in Mountain View, Lafayette, San Rafael, Sacramento, Santa Cruz, etc.

The difficult behaviors this book deals with are: angry, agitated behavior; hallucinations, paranoia; incontinence problems; problems with bathing; problems with dressing; problems with eating; problems with sleeping; problems with wandering; repetitive actions; screaming, verbal noises; and wanting to go home.

Copied below are some excerpts from the four-page section on “Screaming, Verbal Noises.”



Excerpts from

“Screaming, Verbal Noises”
Understanding Difficult Behaviors

by Anne Robinson, Beth Spencer, and Laurie White
Published by Eastern Michigan University


Physiological or Medical Causes
* hunger
* incontinence (wetness, etc)
* need to go to the bathroom
* fatigue
* need for help changing position in bed or wheelchair
* vision or hearing loss that causes misperception of the environment
* impaired ability to speak or be understood
* acute medical problems that result in feeling ill or pain and discomfort

Environmental Causes
* too much noise
* overstimulation or sensory overload
* use of physical restraints
* upset by behavior of other residents

Other Causes
* procedures which are uncomfortable or not understood, such as having an enema, having a dressing changed, being catherized, etc.
* bathing – person may be cold or feel exposed
* dressing – person may be cold or feel exposed
* purpose of mouth care not understood
* touch/turning/repositioning – uncomfortable or not understood
* fear/anxiety
* feeling threatened
* need for attention
* frustration
* boredom/lack of stimulation


* Have a good medical evaluation to check for illness, infections, pain/discomfort, or impaction

* Provide adequate meals/snacks to minimize hunger

* Institute regular toileting schedule to minimize incontinence

* Change promptly after incontinent episodes

* Try rest periods to minimize fatigue

* Make sure there are frequent (at least every 1-2 hours) position changes if person is bedridden or restrained in chair

* Maximize sensory input. (Check to see whether hearing aids and eyeglasses are in place and working properly.)

* Lower stress; create a relaxing environment:
– minimize noise
– avoid overstimulation/sensory overload
– avoid use of restraints
– play soft, soothing music

* Use relaxation strategies to minimize fear, threat, anxiety. For example:
– try massage/therapeutic touch, stroking person’s head, arms, hands
– try placing your arms around the person and gently rocking back and forth
– talk in a soothing voice
– play soft, soothing music or soothing sounds such as tape of rainfall, waves breaking on shore, etc.

* Try these communication suggestions:
– approach person with soothing voice; call person by his/her name; identify yourself
– explain/prepare person for what is to be done using simple, clear, short sentences
– break task into short steps briefly explaining each one
– think of other ways for the person to communicate, such as using a bell. This can enhance the person’s sense of security by feeling that he/she is able to communicate needs to caregiver

* For staff in long term care settings:
– use consistent routines for activities such as bathing, meals, getting ready for bed; keep to the same schedule each day
– identify staff who work well with certain individuals. Consistency in staffing is important.
– plan time to socialize with the person for a few minutes in addition to assisting with activities of daily living
– encourage participation in meaningful activities to minimize boredom and frustration.

* Softly read to person.

* Medication should be used cautiously when other interventions have been unsuccessful and when the vocal behavior is very stressful to the caregiver(s) and/or residents living in the area. This medication should be monitored carefully by a physician/psychiatrist.


Vocal behaviors are most commonly seen in the later stages of progressive dementia. Many people who shout or cry out are physically immobile – wheelchair or bed-bound. The underlying problem is the person’s inability to communicate his/her needs, wishes, thoughts, etc.


“Depression, Delirium & Dementia” – lecture notes

Stanford University (stanford.edu) sponsored a 3-part series on geriatric health in May.  The first evening, May 11, 2006, included this lecture:

“Depression, Delirium & Dementia: What Should We Be Doing?”
Speaker:  Barbara Sommer, MD, Asst Prof of Psychiatry and Behavioral Sciences, Stanford Univ

Local support group member Karen D. gave me her notes on the lecture.  This post attempts to summarize some of the key points in that lecture.


Dr. Sommer stated that life expectancy increases are not due to doctors but to infrastructure changes, such as indoor plumbing.

She stated that 27% of people older than 60 living in a community have some degree of depression.  Depressed people have two times the number of doctors’ appointments than others.  75% of elderly suicides have seen their doctors in the last month.  The rate of elderly white males is increasing.  Elderly women’s suicide rates drop to zero after they stop caregiving for their elderly spouses!

Of those with dementia, 64% have AD, 25% have Vascular Dementia, and 12-15% have Frontotemporal Dementia (FTD).

She mentioned that there are several drugs on the market to treat AD:  three acetylcholinesterase inhibitors (including Aricept) and Namenda.  The standard treatment is to prescribe one of the acetylcholinesterase inhibitors and add Namenda.  Glutamate is essential to the brain.  Namenda restores the glutamate levels to normal.

Dr. Sommer said that memory can be optimized through mental gymnastics, dance and tai-chi, avoiding medication that affects the brain, diet, avoiding obesity, avoiding stress, and optimizing near vision.

Medication that affects the brain includes some anticholinergics, benzodiazepams or sleeping pills, antihistamines, etc.

Those with a higher BMI (body mass index) have a higher risk of dementia. She pointed out that when you lose near vision, you lose stimulation and the ability to participate in activities.  Bottom line – lose weight and see your optometrist!

Dr. Sommer repeatedly noted the negative effects of stress.

Dr. Sommer said that delirium is reversible.  She distributed an article on “Preventing delirium in older people,” published 7/15/05 in the British Medical Bulletin.  You can find an abstract of the article online at no charge:


The article states that:

“Up to 50% of delirium affecting older people develops after admission to (the) hospital.  These cases often result from hospital-related complications or inadequate care.” 

The paper focuses on how to prevent the delirium that is acquired in the hospital and is preventable.


“Cognitive Changes w/Aging” and “Maintaining Health” – lecture notes

Stanford sponsored a 3-part series on geriatric health in May. The second evening, May 18, 2006, included two lectures:

“Cognitive Changes With Aging: How Much Is Too Much?”
Speaker: Michael Greicius, MD, MPH, Dept of Neurology, Memory Disorders, Stanford Univ

“The Big Picture of Maintaining Health — Medications, Tests and Safety At Home”
Speaker: Yusra Hussain, MD, Dept of Internal Med, Geriatrician, Stanford Hospital & Clinics

This email attempts to summarize some of the key points in those lectures and provide a web link to the handout.

Dr. Greicius said that one-tenth of people over 65 have Alzheimer’s Disease. One-third of people over 85 have AD. 70% of the dementia cases are AD. The most common non-AD dementias are Vascular Dementia, FTD, and LBD. According to the “nun study,” the more education you have, the less impaired you are than someone with less education for the same degree of AD.

There is a disorder known as Mild Cognitive Impairment (MCI). Half of those with MCI convert to AD every four years. Scientists are looking into who will convert and how this can be prevented. Neither Vitamin E nor Aricept helped treat MCI.

There are many reversible causes of memory loss including B12 deficiency, low thyroid, medication (anticholinergics including some medications for urinary incontinence, beta-blockers, enzodiazepines, opiates, anti-epileptics, some medications for neuropathy), depression, alcohol, and retirement.

In general, people in their 50s and 60s can handle less than half the alcohol they could handle in their 30s.

There are some cognitive IMPROVEMENTS with normal aging: emotionality, semantic knowledge (knowledge of the world), and vocabulary.

Dr. Greicius spoke about cognitive decline with normal aging. Related to that topic, he distributed an article from the journal Nature Review Neuroscience, Feb ’04, titled “Insights into the Ageing Mind: A View from Cognitive Neuroscience.” He said this was an excellent review of the topic. An abstract of the article can be found at: (The full article costs $30.)

What can be done to minimize cognitive decline? His guesses include living healthy, moderate alcohol consumption, and no cigarettes. He explored the possible role of NSAIDs and cognitive training in minimizing decline.

His recommendations include: all things in moderation; minimize cardiovascular risk factors; sell your TV; read, dance, exercise; spend more time with friends and family; participate in medical research. Two journals did a review of ginkgo biloba studies. They showed no benefit. He doesn’t recommend taking extra Vitamin E.

Dr. Greicius said that there is a GRAIN of truth only to the layperson’s notion that for the clock test (part of the 4-hours of neuropsychological testing) those with AD can draw the clock and those with LBD cannot. He said that generally speaking those with LBD have visuospatial impairment early on, which is why they can’t draw the clock. But not all those with LBD have visuospatial impairment at the time of diagnosis. Another point: those with late stages AD can’t draw the clock either.

Dr. Hussain said that most people get a serious chronic condition at the age of 55. These can include geriatric syndromes, which are urinary incontinence, MCI, and depression.

If you think your health is excellent, you will live longer. If you think your health is merely good, your lifespan is normal/average.

About half of all deaths are attributable to preventable factors.

A healthy lifestyle includes: maintaining social life; being active each day; eating well; avoiding tobacco and excessive alcohol intake; following up on periodic health examinations and screening tests.

The best diet is rich in fruits, vegetables, whole grains, and nuts. One should have moderate consumption of polyunsatured fatty acids, omega 3 fatty acids, protein and dairy. One should have low consumption of carbs and animal fats. She does not recommend taking a multi-vitamin with antioxidants as a supplement. She says that antioxidants should be part of the diet.

In order to maintain cognitive function, she said that the “nun study” shows that it’s important to have a purpose in life and to stay busy with family and friends.

Frailty cannot be reversed.

That’s it! I didn’t attend the third lecture nor was I very interested in it so I won’t be emailing out notes from that one.


Caregiving for those with Dementia – Class Notes

This post will be of interest to those who are caring for people with dementia…

I attended the 4-week class on caregiving for those with dementia at Avenidas in Palo Alto this month (May ’06). The class, called “It Takes Two: Dealing with Dementia-related Behavior,” was run by the Family Caregiver Alliance (caregiver.org), an SF-based organization that offers classes, resources, and counseling to those throughout the SF Bay Area and nationally.

A Dementia Fact Sheet was handed out. It states:

“[The] term ‘dementia’ is used by the medical community to describe patients with impaired intellectual capacity… Signs of dementia include short-term memory loss, inability to think problems through or complete complex tasks without step-by-step instructions, confusion, difficulty concentrating and paranoid, inappropriate or bizarre behavior. Clinical depression also may accompany early signs of dementia.”

In the first class, we discussed dementia. I think I wrote these statistics down correctly:
* 10% of people older than 65 have AD or dementia
* over the age of 85, almost 50% of the people have AD or dementia

There are reversible dementias and irreversible ones. The importance of getting a diagnosis was made clear by the fact that some dementias are reversible. In the first class, different diseases with dementia components were discussed, beginning with AD. LBD and PSP were both discussed.

Though it was not distributed, I think this publication summarizes the information presented the first day of class:


Lots of FCA-authored materials were handed out at the first class, including:

1. Dementia – Fact Sheet: I can’t find this on their website. It lists possible causes of dementia (deteriorating intellectual capacity) including reactions to medications, emotional distress, metabolic disturbances, nutritional deficiencies, etc.

2. Alzheimer’s Disease – Fact Sheet: this is available on their website at:


The fact sheet breaks AD into three stages and describes the dementia-related behaviors of each stage.

Note that the Dementia with Lewy Bodies – Fact Sheet on their website is woefully out of date. I’d suggest getting the latest info from the LBDA website. In particular, this brochure is excellent for caregivers, MDs, etc:


3. Tips for Interacting with a Person with Dementia: I can’t find this on their website. The tips are:
* Reassure, reassure, reassure
* Try to remain calm
* Do not disagree with made up stories
* Give compliments often
* Respond to the person’s feelings, not their words
* Use distractions
* Do not try to reason with the person
* Give yourself permission to alter the truth
* Avoid asking questions that rely on short term memory
* Break down all tasks into simple steps
* Respond calmly to anger, don’t contradict or argue

4. Tips on Interacting with Persons with Alzheimer’s Disease or other Dementias (pages 1-3) and Qualities of Friendship in Relation to Someone with Dementia (page 4). I can’t find this on their website.

5. Principles for Understanding and Communicating with a Person with Dementia. I can’t find this on their website. The five principles are:
* Knowing and accepting the cognitive limitations of the person will help you set realistic expectations of the person’s behavior.
* Understand that OUR thoughts, attitude, and actions significantly impact on the behavior of the person with dementia.
* Recognize that behavior, even in a confused person, more likely results from a cause. It is triggered.
* Learn that to enhance communication with a person with dementia requires a commitment to remain “connected” regardless of the content of the conversation.
* Understand that changing behavior takes time, effort, and patience. Reward yourself often for working towards change.

6. A Reference List for Families and Professionals – Caring for Individuals with Dementia: I can’t find this on their website. It’s a list of books on family caregiving and dementia care.

7. Caring for Adults with Cognitive and Memory Impairments – Fact Sheet: this is available on their website at:


The other three classes are hard to summarize. Basically we discussed and role-played communication strategies based on the tips and principles listed above.

This class will certainly be taught again in the Bay Area. It was taught in April in SF, I believe. And then the May class was in Palo Alto. My guess is that it will be taught again in the fall. You can check in periodically with the FCA’s website listing of classes to learn what’s available:



“Hard Choices for Loving People” booklet

Most of us aren’t at the point yet when we are thinking about these things — feeding tubes, CPR, and end-of-life care — but it may be beneficial to review some of these decisions and information now with our loved ones.

There’s a book called “Hard Choices for Loving People:  CPR, Artificial Feeding, Comfort Care, and the Patient with a Life-Threatening Illness” that may assist in the discussion.  You can purchase the book online ($7). At the present time, it looks like you can read it online at no charge.  See:


The author, Hank Dunn, a healthcare chaplain, definitely has a point of view, which is that feeding tubes are not appropriate for those with dementia.

Note that “Hard Choices” is available in other languages as well, including Spanish and Chinese.



Large display clock

This is in the category of a small tip….

My dad (with PSP) had been getting up in the middle of the night, thinking it was morning.  Probably most of the time this happened he fell because he’s very tired and unsteady on his feet at the wee hours.  Over half of his falls used to occur at 3am or 4am.  I had been addressing the “cause” of the falls.  For example, he would often fall at 3am while putting on his robe in the bathroom.  I moved the robe to right next to his bed so he can put it on while sitting down.  But then I addressed the larger issue of why he gets up in the middle of the night.  I learned that he could not read the time on his alarm clock any more.  The display was too small.

I went to the Peninsula Center for the Blind and Vision Impaired (PCBVI) in Palo Alto, CA and found a large display clock for $26.75.  Their supplier is MaxiAids (www.maxiaids.com or 800-522-6294), who sells the clock for the same price.  It’s item #74852 – AM-FM Clock Radio with Extra Large LED Display.  The numbers are green.  Turns out that some low-vision people can see green better than they can white or red.  Anyway, this clock solved the problem of not knowing what time it was in the middle of the night.  Dad no longer gets up at 3am or 4am so those falls have been eliminated.  (Unfortunately there’s still lots of other falling!)

The PCBVI and MaxiAids also have clocks that talk (say the time).  We might have to go that route if Dad’s vision problems worsen.



“Caregiving at Life’s End”

The American Hospice Foundation (americanhospice.org) has wonderful articles about hospice as well as caregiving.  In this 2004 article, Johanna Turner discusses the challenging of caregiving at the end of a loved one’s life.

This article reviews several emotions that caregivers may feel while caring for someone at the end of life:

  • alone and exhausted
  • fear
  • comforter-in-charge
  • (fear in making) hard decisions
  • feeling angry or guilty

Then the author provides many suggestions to cope with each feeling.



Caregiving at Life’s End: Facing the Challenges
American Hospice Foundation
By Johanna Turner

With an aging population and a dwindling pool of family members available to care for them, increasing numbers of Americans now find themselves in the role of caregiver. Much has been written about the significant challenges of caring for chronically ill family members or those with dementia, but the realities of caring for a dying loved one are unique and less understood. If you are a caregiver for someone in the final stages of life, you may recognize yourself in the following paragraphs and find benefit in the accompanying suggestions. If you have hospice care, these professionals can help you sort out the answers.

Alone and Exhausted

All caregivers experience isolation and fatigue. There is an unmistakable urgency in caregiving at the end of life, however, because time is short: “I can rest after this is over, but I want to do everything I can while I can.” You may not want to leave home today – or even take a long bath or short nap – because there may not be many days left.

Moreover, care requirements are often staggering. The situation may change daily, or even hourly. Frequent medications, dressing changes, safety, toileting, feeding, and emotional support seem to fill every moment. You want to do your very best and it seems important that you do it yourself, so you may be reluctant to make a place in that schedule for self-care, or to ask for help. Caregivers may be tempted to turn to food, alcohol, or to the drugs on-hand for comfort.

These go-it-alone weeks leave little time to grieve. Grief does not suddenly appear after a death, it begins with the first inkling that the one you love may not get well. When the busy-ness of caregiving shuts out grief, your emotional and physical health can suffer when it is finally faced.

Accepting your indispensable role in this situation also means accepting the importance of your own well-being. You cannot know how long you will be caregiving, and if you are determined to see it through, self-care is part of your job each day.


* Make a list of tasks that others can do – shopping, providing nourishing meals, doing laundry, maintaining contact with others, or just being in the house so that you can nap – and resolve to say yes when asked.
* At least once each day, ask a family member or friend to help you with something. You may be doing such a good job that your need for help is invisible to others.
* If you belong to a faith community, ask what help is available. Many such communities have individuals or teams that are dedicated to practical support.
* Find out about your local hospice. Hospice professionals have the expertise to understand how long your loved one may live and can help you plan to manage this time. That plan may include in-home aides, trained volunteers, and proven community resources.
* See your doctor. Take note of your own weight gain or loss, inability to sleep, or increasing episodes of feeling like you are falling apart. Self-medicating with drugs or alcohol will decrease your capacity to provide good care and place both you and your loved one at risk.
* Thoughtfully plan for your own nutritional needs at the same time you plan for “your patient.” A hospice dietitian can help.
* Identify at least one person you can lean on, cry with, and talk to about what is happening with your spirit. End-of-life caregivers often do not wish to burden others who are already sad, so it is good to speak with an outsider, such as a counselor or member of the clergy. Hospice social workers can fill this extraordinarily important need.


It is no exaggeration to say that end-of-life caregiving, like raising children, is probably the most important thing you will ever do. This person that you love depends on you for the very quality of his or her life. Your actions are the difference between pain and comfort, between being agitated and being at peace. Tasks like giving injections or suppositories, ostomy care, or respiratory treatments seem daunting – and how do you shampoo hair when someone can’t get out of bed? None of us comes to caregiving with the knowledge and skills we will need. Feeling unprepared to do things you’ve never done before is understandably frightening.

Many of us are afraid of the unknown. Our culture has kept dying out of sight, and few Americans have been present for a death. You may fear what might happen at the time of death, and you may also be fearful about your own capacity to handle it. Beyond the loss is an even greater, perhaps more frightening, unknown – your life without your loved one.


* Get good information on what you need to do and an expert to teach you how to do it – a hospice nurse does this every day. Make sure that you have written information and 24-hour backup for questions that arise in the middle of the night, something that a hospice can provide.
* Accept that you may reach your limit and that other options are available. Even your best intentions and a good support system may not be enough if care is complex and physically demanding. * Most hospices can provide their expert care in nursing homes or assisted living facilities when care at home is not possible.
* Learn what will happen when your loved one dies. Although every detail cannot be foreseen, experienced professionals like hospice nurses can tell you generally what to expect and what your loved one will experience. Many people have feared watching someone die, but with good preparation, find it to be a healing experience.
* Decide if you would prefer to have others with you at the time of death or if you want to be alone. Make a plan that ensures you can summon others on short notice.
* Discuss what frightens you with someone who can address your specific concerns: a clergy person or hospice chaplain for spiritual worries, the doctor or nurse about physical changes, and a counselor or hospice social worker for fears about your own capacity to cope.
* Think about how you will manage the first weeks after the death but delay other decisions about your future. You have too much on your mind and heart right now for long-range planning, even though you may feel a little panicky. Put it away for another day.

The Comforter-in-charge

Even as you have the primary responsibility for caregiving, your family and friends probably look to you for sympathy and support, as well: a parent needs to comfort the children while caring for the spouse; a daughter nurtures and provides solace to her father while tending to her dying mother. You have become the manager of this sad time for everyone, and you are really giving care in several directions at once. It is easy to get emotionally lost in this busy traffic circle of need.

In the face of the distress around you, you may also believe that it is up to you to be the brave one. It is very difficult to bear this bravery burden and assure others that all will be well when you do not believe it and feel out of control, yourself.


* Let other family members know that you are grieving and that you are getting help with these emotions. Set an example.
* Gently protect yourself. It’s okay to say “I know this is awful for you, we’re all struggling in our own way. I’ll try to help you but my first priority has to be taking care of Dad, I’m sure you understand.”
* Accept how emotionally vulnerable you are rather than fighting it. Bravery – to the point of blocking or denying your feelings – is neither healthy for you nor a good model for those around you.
* Identify a safety net, not only for yourself but also for others affected by this impending loss. Children’s friends (and their parents) and teachers need to know what is happening. Have a family meeting and recommend that each person think about whom he or she can turn to for understanding. The wider this circle of support extends, the better each of you can care for yourself and each other. Hospice professionals and volunteers can be part of that safety net.

The Hard Decisions

Caregiving at the end of life includes making decisions, some of which may seem unbearably hard. The challenge is to trust the information on which you must base these decisions and to trust your ability to make them wisely and lovingly. If the one who is ill can no longer make decisions or needs you to lead that process, you will probably need to decide when it’s time to stop aggressive, curative treatment and focus instead on comfort care. For many, this is an acknowledgment of mortality that has been kept at arm’s length, and it is not unusual for family members to disagree. An advance directive or a timely discussion – before decisions must be made – can make your life a lot easier.

Even as the disease progresses and death seems not so distant, you may still face tough choices. Will another radiation treatment lessen the pain of bone metastases or will it be too burdensome? Do we treat this pneumonia with antibiotics or let the infection run its course? Do we transfuse? Do we put in an IV or feeding tube?

The issue of feeding and hydration evokes a strong and complex emotional response. From childhood, we are taught that being well nourished and drinking lots of water is important for just about everything. Especially for women, feeding those we love feels almost like it is part of our genetic code and is synonymous with “taking good care” of another. But you may be asked to stop feeding your loved one, by mouth or by artificial means, or you may need to do the asking at the time when nourishment becomes an uncomfortable burden rather than a benefit. This is an arduous decision.


* It’s not too late to create an advance directive if the one who is ill is mentally clear and can communicate with you – get busy today. You can read more about directives on the American Bar Association site, and download the forms from Caring Connections. Hospices can also provide this information.
* Conversations are just as important as documents, so start talking and listening. If it is difficult to raise the subject, start with “Being with you has made me think about how I’d like to be treated when I am very sick. I wonder at what point I’d decide that a treatment is not making my life better and I would choose another path. Can we talk about this?”
… or a briefer conversation: “Tell me what is most important to you in the months ahead because I want to help make sure that happens.”
* Get expert guidance on treatment decisions as the disease progresses. There is almost always something else that can be done, but the important questions are:
– How does this treatment fit with our wishes?
– Will it change the outcome of the disease?
– Will it enhance or diminish the quality of life?
Physicians trained in palliative medicine and hospice professionals can help you find the answers to these questions.
* Learn about how the body processes food and liquids as death approaches. The professionals mentioned in this article can tell you about care that does not cause discomfort and can support you in making difficult choices.

Feeling Angry and/or Guilty

During such an intense, emotional time, you may discover feelings that disturb you. Anger is a common reaction when life seems out of control, and you may be angry at doctors, your relatives or yourself. You may just be angry that your life is so difficult right now, and perhaps you feel guilty about these feelings. Or you may have guilty regrets about what you have or have not done.

It doesn’t take much of a stretch to feel like a martyr. You have put your own life on hold to be a caregiver while others seem to go on with their lives. There are outpourings of encouragement and good wishes for the one in your care, and sometimes you feel invisible or like hired help: “You’re so strong, but I’m so worried about your brother.” Of course you want support for your loved one, but still… And that may be something else to feel guilty about.

The thought that probably appalls you the most is the wish that can come in the night after a long and difficult day, a wish for it all to be over. “Okay, death, get on with it. We’re all pretty tired here and we can’t see the end of this, and it’s just too hard. I’m not sure I can keep doing this and there is no one to whom I can hand in my resignation, so let me not hear breathing when I go back in the room…”

Each situation is unique and not every end-of-life caregiver has these feelings. But if you do, it is by no means a reflection of not loving enough, not caring enough or not intending to continue caregiving. It is a reflection of the fact that you are a human being who has reached the end of your emotional rope and you are afraid you will begin to fall short of meeting the challenges yet ahead, and it is past time to find – and accept – help.


* Make physical outlets for your anger; find an opportunity to work out in a gym or make a place at home to harmlessly hit, rip or throw something. Almost any loss produces anger, and this anger grows from a loss of control and the impending loss of the one you love. It’s normal.
* Make a list of the things that make you feel guilty. If you cannot discuss them with another, like the hospice social worker, look at the list and consider how recent information and hindsight makes you second-guess yourself. Cross off the things for which you can say, “this was the best I could do with what I knew at the time.” Forgiveness is for the remainder of the list.
* If your faith has been an important part of your life, talk to your clergy person or a hospice chaplain about your obstacles to forgiving others and forgiving yourself.
* Consider that your readiness for death to come is a sign of your acceptance of its inevitability as well as your own exhaustion. Seek additional physical and emotional support from friends and professionals. Hospices offer inpatient respite care to allow family caregivers some time for rest and renewal.

Finally, your caregiving situation is medically, emotionally and spiritually unique. Well-meaning friends will share their stories, but do not accept comparisons that cause you distress. Know that thousands of people share your struggle at this moment, and you are all giving an amazingly complicated and wonderful gift.

© 2004. American Hospice Foundation. All Rights Reserved.