Category Archives: Caregiving – General

Foster independence and offer respect (advice for caregivers)

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Local support group member and volunteer Denise is reading the book How to Care for Aging Parents.  She is offering occasional reports on the highlights of the book.  She has read the second chapter, which is about the caregiving role.  Here are Denise’s take-aways.  Other than the first paragraph of Denise’s notes (which applies to adult children caregivers), all of the rest of the information applies to all caregivers.

Robin

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Denise’s Notes to

Chapter two – “Your Parent and You”
of the book “How to Care for Aging Parents”
by Virginia Morris and Robert Butler
2004

Chapter 2 acknowledges how common it is to still feel the push and pull of the parent/child relationship, no matter how old you are. It recommends hiring a good therapist to tackle those issues, but goes into some detail as to how to approach them on your own. At a minimum you must find ways to set aside your parent’s ability to push your buttons so you can do an effective job of caregiving with as little frustration as possible.

It also has some good words of advice for ALL caregivers.

The first is to foster independence wherever possible. It is difficult to watch a loved one struggle with tasks that were once easy for them. Sometimes we worry about symptoms or frailty contributing to an injury, but we all need exercise. Any amount of movement helps maintain flexibility, balance, even good bowel health. Doing for oneself is also good for the brain. Maintaining one’s identity and dignity can help ward off depression and, possibly, the onset of dementia. It actually takes more patience, time and effort for you, as a caretaker, if the person is slow or messy about some tasks, but it does worlds of good if you are both willing.

Try not to be overprotective of the person you care for. If you feel they are taking excessive risks, start by expressing your concerns rather than bossing around a grown adult. Perhaps your elderly mother doesn’t know breaking a hip can be fatal. Offer solutions to reduce the risk and still allow the activity to continue. If you’re worried she isn’t steady enough on the stairs, suggest moving her bedroom downstairs to avoid them all together. Remember, you only have so much influence dealing with a competent adult. We all have the right to make risky decisions. We do it every day when we get in the car, smoke a cigarette, even eat fatty foods. Some people would rather die living fully than live longer, just like the saying:

*** Life is not a journey to the grave with the intention of arriving safely in a pretty, well preserved body, but rather to skid in broadside, thoroughly used up, totally worn out, and loudly proclaiming, “Wow! What a ride!!!” ***

There are times when it is appropriate to step in and forbid someone from exercising their independence. If the safety and/or health of themselves and/or those around them are seriously threatened you have an obligation to intervene. If you find medication is being misused, you should take steps to dispense them properly. You may find it necessary to pay bills to prevent utilities being shut off or turn off the gas when someone is incompetent to use the stove. Many of us have had to take away car keys. Its not easy. Enlist the assistance of a doctor, if you are unable to manage it on your own. They can report to the DMV, which will suspend or revoke the license, depending on the doctor’s statement.

If you find yourself in doubt about where to draw the line; whether to step in and, if so, how; seek advice from someone with experience. Since this book is all about helping aging parents, it suggests asking a Geriatric Care Manager, Hospital Social Worker or Geriatric Department, an Area Agency on Aging, or Adult Protective Services, which is part of the Department of Social Services.

The second bit of good advice for all caregivers is a big reminder to offer respect. Remember, you may be in their shoes one day. Some suggestions to that end are:

– If the person you’re caring for is inactive, take the time to ask their opinion on various topics to keep them involved in daily life around them. If they’re up to it, read the newspaper, magazines or pick out a recipe together. Don’t forget to listen to their comments and answers.

– If they are unable to speak, assume he or she understands. Explain what’s going on and reassure that his or her needs and preferences are being considered at every point. This is where having those conversations ahead of time come in handy.

– Never speak about someone as if they aren’t present, when they are.

– Don’t be afraid to ask that other caregivers do the same. Correct them if they are behaving in a disrespectful way or doing anything you feel the patient would feel uncomfortable with, if they could speak for themselves.

Keep in mind that IF you’re dealing with someone who is exceptionally difficult you could be dealing with a bigger problem. For instance:

– Unremitting orneriness, social withdrawal, or refusal to eat can be signs of depression. Seek medical advice.

– Complaining, calling constantly, or becoming sick at just the wrong moment (like when you’re about to leave on vacation) can be a way to control you. Get a reliable backup caregiver so you have respite.

– Between 2-5% of elderly people living in the community (not long term care facilities) are excessively suspicious or paranoid. Seek a psychiatrist with elder experience. Treatment is usually carefully balanced medication.

– At least 5% of people age 65 and older suffer hypochondria or undifferentiated somatoform disorder. In the former, a person is obsessed with the idea they have a serious illness. In the latter, a person complains about symptoms (fatigue, loss of appetite, abdominal pain) that have no medical basis. Psychotherapy doesn’t help either of these conditions. Your best bet is a good, firm doctor to sort out the real medical issues and be firm about the imaginary ones.

-Denise

Off-label drugs – use and need to study 14 of them

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I think many of us could’ve come up with this list of medications that are used for off-label purposes that should be studied by their manufacturers. Several atypical antipsychotics are on the list — Seroquel, Risperdal, Zyprexa; these meds are approved for schizophrenia. Many in our local support group use this type of medication for nonapproved purposes. Several antidepressants are on the list as well; there are several nonapproved uses of these meds.

First is an article from Stanford Medicine News with a list of 14 medications that are “in need of study for their off-label uses.” And then there’s an article from a publication of the Medicare Rights Center about Medicare’s approval (or not) of drugs for off-label uses.

http://communitymednews.stanford.edu/20 … label.html

Off-label drugs require more study
Stanford Medicine News, Spring 2009 issue

Stanford researchers are questioning a common practice of prescribing drugs for nonapproved uses, saying that some of these drugs need more scientific scrutiny.

Many doctors prescribe drugs to treat conditions for which they’re not approved, a practice known as off-label prescribing. But some widely used off-label drugs, particularly antidepressants and antipsychotics, are in urgent need of more scientific study, researchers concluded. They identified 14 medications most in need of study for their off-label uses.

“Off-label prescribing means that we’re venturing into uncharted territory where we lack the usual level of evidence presented to the FDA that tells us these drugs are safe and effective,” said Randall Stafford, MD, PhD, an associate professor with the Stanford Prevention Research Center. “This list of priority drugs might be a start for confronting the problem of off-label use with limited evidence.”

To determine which drugs were most in need of additional research, Stafford and his colleagues called on a panel of nine experts from the FDA, the health insurance industry, the pharmaceutical industry and academia. The panel used three factors to prioritize which drugs should appear on the list: frequency of use, safety and cost.

At the top of the list was quetiapine (brand name Seroquel), an antipsychotic approved by the FDA in 1997 for treating schizophrenia. Rounding out the top five were warfarin, escitalopram, risperidone and montelukast.
[quetiapine = Seroquel; escitalopram = Lexapro; risperidone = Risperdal] [you’ll have to view the article online to see the list of 14 medications]

http://www.medicarerights.org/issues-ac … 09_07.html

Off-Label Use of Prescription Drugs
February 19, 2009 • Volume 9, Issue 7 of Asclepios
Published by the Medicare Rights Center

For cancer, but also for other diseases, doctors often prescribe medicines that were approved by the FDA as treatments for other conditions. A drug approved by the FDA for colon cancer is used to treat breast cancer, for example.

Sometimes, the prescribing of medicines for these off-label indications is based on strong evidence of efficacy from clinical studies published in respected journals that are peer-reviewed—vetted by leading doctors and researchers in the field. In other cases, the off-label use is based on weak evidence—a poorly designed study or case reports of how the medicine worked in one or two patients—or is the result of illegal marketing campaigns by the drug manufacturer.

In the first scenario, the patient can receive a treatment that will save her life or help her live a full life despite a chronic and debilitating disease. In the second scenario, the treatment may put the patient’s life at risk, either from the side effects of the medicine or because the treatment is ineffective, or both.

Policymakers have tried to design Medicare coverage policy so that Medicare will pay for off-label treatments when there is good evidence of safety and efficacy, and not pay for treatments that are unsafe and unsupported by clinical evidence. To distinguish the two, Medicare had relied primarily on privately published reference manuals known as compendia.

Newly published research shows that the compendia are not doing a good job keeping up with the most current research and incorporating it into their recommendations. There is also widespread concern that compendia editorial decisions—which off-label uses they support and which they do not—are unduly influenced by drug manufacturers, and that publishers of the compendia do not have adequate policies to guard against conflicts of interests in editorial decisions.

Because of these twin failings, much attention has focused on the possibility that Medicare is paying for expensive off-label treatments that are ineffective and potentially unsafe. That is a legitimate concern.

But these deficiencies in the compendia can also mean that Medicare is denying coverage for off-label uses that have strong support in the peer-reviewed medical journals. If the compendia are not keeping up with the research, then they may miss published studies’ support an off-label use of a particular medicine.

It may seem counterintuitive, but undue influence by drug manufacturers may also lead the compendia to omit off-label uses that have been shown to be effective in clinical studies. If drug manufacturers can influence the decision to review a drug for a particular off-label indication, then there is much less chance that a use for a rare disease that has little market potential will be reviewed. Similarly, brand-name drug manufacturers have much less incentive to push for compendia support for drugs with generic competition than for drugs that still have patent protection.

What this means is that it is in the interest of consumers for the Centers for Medicare & Medicaid Services to hold the compendia to high standards of performance and to require rigorous and effective conflict-of-interest policies, including over which off-label indications are brought up for review.

It also means that there needs to be a safety valve allowing case-by-case coverage decisions when the compendia may have missed the mark. Such a safety valve exists for cancer drugs covered under either Part B (delivered in the oncologist’s office) or Part D (generally, purchased at the pharmacy). Where there is no support in the compendia for an off-label use, Part B contractors can review the peer-reviewed journals for studies that demonstrate effectiveness.

The safety valve also exists for other drugs covered under Part B. Contractors are instructed by CMS to look at both the compendia and the medical literature on a case-by-case basis.

But under Part D, for drugs that do not treat cancer, there is no safety valve. If there is no compendia support for an off-label use, the drug cannot be covered. The freedom that state Medicaid departments and private insurers have to look past the compendia at the research and make a case-specific coverage decision does not exist for Part D plans.

It is high time that policy makers in Congress and the Obama administration recognize the shortcomings of the compendia as arbiters of coverage, and allow coverage decisions to be made on an individual basis on the strength of sound clinical research published in peer-reviewed medical journals.

* * * *

Medical Record

“The compendia’s stated methods varied greatly from their actual practices. Compendia cited little of the available evidence, often neither the most recent nor that of highest methodological quality. Compendia differed in evidence cited, terminology, detail, presentation, and referencing. For the 14 off-label indications studied, the compendia differed in the indications included and whether and how they recommended particular agents for particular types of cancer.” (Reliability of Compendia Methods for Off-Label Oncology Indications, Annals of Internal Medicine, March 2009)

“FDA-approved drugs used for indications other than what is indicated on the official label may be covered under Medicare [Part B] if the carrier determines the use to be medically accepted, taking into consideration the major drug compendia, authoritative medical literature and/or accepted standards of medical practice.” (Medicare Benefit Policy Manual, Centers for Medicare & Medicaid Services, December 2008)

“If CMS fails to adjust the current regulations appropriately, Congress should revise the language of the Part D statute to more clearly allow for the consideration of other evidence of medical necessity in Medicare Part D coverage determinations and appeals, including peer-reviewed medical literature and the individual’s medical history.” (Off-Base: The Exclusion of Off-Label Prescriptions from Medicare Part D Coverage, Medicare Rights Center, August 2007)

* * * *

The Medicare Rights Center is a national, nonprofit consumer service organization that works to ensure access to affordable health care for older adults and people with disabilities through counseling and advocacy, educational programs and public policy initiatives. Visit our online subscription form to sign up for Asclepios at:
http://www.medicarerights.org/about-mrc … signup.php

The New Face of Caregiving: Male Caregivers

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This article from a recent AARP Bulletin Today is about male caregivers. The seven tips for male caregivers at the bottom of the article certainly apply to all caregivers. John Young, president of the LBDA (Lewy Body Dementia Association) Board, is mentioned in the article. He attended our December 2008 support group meeting in San Mateo, CA. He told many stories about caring for his wife with LBD.

Robin

http://bulletin.aarp.org/yourhealth/caregiving/articles/the_new_face_of_caregiving.html



The New Face of Caregiving: Male Caregivers 
By: Cathie Gandel 
Source: AARP Bulletin Today 
January 23, 2009 

When his wife, Chris, was diagnosed with breast cancer on their 19th wedding anniversary, Dave Balch suddenly found himself with two full-time jobs: running his home-based software business and taking care of her. “I don’t know how I managed everything,” says the 60-year-old from Twin Peaks, Calif., whose wife continues to fight recurrences of the disease six years later. “But you do what you have to do.” 

Each year, more Americans are finding themselves in a similar situation—and challenging preconceived ideas about men and caregiving. 

“People think that male caregiving means that the guy calls home from the job and asks his wife how his mom is doing,” says Donna Wagner, professor of gerontology at Towson University in Towson, Md. “That’s not true at all.” 

A 1997 survey conducted by AARP and the National Alliance for Caregiving, a research and advocacy coalition, found that 27 percent of caregivers were men. By the 2004 update, that figure was almost 40 percent, with more male caregivers (60 percent) working full time than women caregivers (41 percent). Among the reasons for the increase: smaller families, longer life spans, more women working outside the home and greater geographic separation of family members. 
While male caretakers face many of the same challenges as their female counterparts—including depression, stress, exhaustion and reduced personal time—they approach their caretaking role differently, say some experts. 

“Men approach caregiving as a form of work, a series of tasks that needs to be accomplished,” says Edward H. Thompson, coeditor of Men as Caregivers and director of gerontology studies at Holy Cross College in Worcester, Mass. “I don’t mean that to sound harsh. It’s just the way they look at things.” 

Because they are used to delegating, they are more comfortable seeking outside help when they need it, says Richard Russell, associate professor of social work at the State University of New York’s College at Brockport. 

Donald Vaughan, a 51-year-old freelance writer in Raleigh, N.C., has an aide come in three times a week to bathe and shave his father. “It’s worth every penny I pay,” he says. 

But despite feeling isolated, men tend not to seek help for themselves, at least not from traditional support groups. Instead, some forge their own connections. In Rochester, N.Y., some fellow caregivers meet once a week for breakfast. “The men talk about sports, politics and grandchildren,” Russell says. “They don’t mention caregiving. It’s as if they have made a pact that this is their time to be just regular guys.” 

Men also try not to bring their caregiving situation into the workplace. They not only have been socialized to keep things close to the vest, they also perceive a stigma associated with taking time off for caregiving responsibilities—and sometimes a lack of understanding from employers. 

John Young experienced that feeling firsthand. The 55-year-old nursed his late wife through Lewy body dementia, a disease that combines the mental deterioration of Alzheimer’s disease with the physical disability of Parkinson’s disease. When his wife became ill, Young was teaching in a police academy in a Houston suburb. At first she was able to stay on her own while he worked, but one day she called with an emergency and he had to rush home. “When I returned, my boss called me in and asked, ‘How much longer does she have?’?” Young says. “I knew it was time to go.” 

Even those who work at home have trouble juggling responsibilities. “Taking care of my dad has had such a dramatic impact on my life,” Vaughan says. “One part of my brain is always on my father. And my time is nickel-and-dimed throughout the day. It’s hard to get a long period when I can do my work.” He interrupts his writing intermittently to make sure his father drinks enough fluids and walks up and down the hallway for exercise. 

“The worst part is the exhaustion,” says Gary Noble, 64, who cares for his wife, who has multiple sclerosis. He also works as a bus driver in Livermore, Calif., and often has split shifts. He may come home at 8:30 p.m. Before he goes to bed at 9:30, he has to cook, clean up and tend to his wife’s needs. He needs to be up again at 3 a.m. “I’d appreciate just a few hours off sometimes,” he says. 

John Carlson, 57, of Woodbury, Minn., takes care of his 88-year-old father, who is in the early stages of Parkinson’s. “The most difficult part is having time away from home,” he says. “Dad covets my time, as most of his days are spent alone.” 
While any relationship may suffer in the caregiving equation, the issues are particularly difficult for those caring for a spouse, says Donna Wagner. Richard Anderson, president of the Well Spouse Association, a nonprofit organization that provides peer support to those caring for a partner with chronic illness or disability, agrees. He took care of his late wife, who had an autoimmune disease, for 29 of their 31 years of marriage. 

“Spousal caregivers are different because of the intimacy of the relationship,” he says. “It’s hard to have sexual feelings toward your partner if you have to deal with incontinence and other personal issues.” 

Despite the difficulties these men face, there is some good news. “My wife and I spend a lot more time together,” says Ray Heron, 57, of Charlottesville, Va., who has been caring for his wife, who has MS, for 10 years. 

The caregiving relationship has brought Chris and Dave Balch closer, too. “This can really put your love for each other to the test,” Chris says. “In our case, it made it stronger.” 

Tips for Male Caregivers 

“There is no manual on this,” says Vaughan, the freelance writer in Raleigh, N.C., who cares for his father. “You learn day by day.” But here are seven tips passed on by men on the front lines of caregiving. 

1. If someone asks what they can do to help, have a list in the back of your mind and tell that person. 

2. Have something to look forward to—whether it’s a big trip or just a rental movie to watch at home. Remind yourself that you will get through this. 

3. Acknowledge your emotions. You’re human, not a robot. 

4. Set up a group e-mail to keep family and friends in the loop. 

5. If you’re a spousal caregiver, don’t put off shared pleasures. If you and your wife always dreamed of going to the Caribbean and the trip is still feasible, do it now. 

6. Remember that most of the little issues don’t count. Discuss them and find what works for both you and your patient. 

7. Learn as much as you can about your patient’s disease, even though it might be scary. 

——————————————————————————– 
Cathie Gandel is a freelance writer based in New York.

“Learning to Be Good Enough” as a caregiver (NYT)

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I really enjoy “The New Old Age” blog on the New York Times (nytimes.com). Last Thursday’s entry was about the concept of NOT being a perfect caregiver but being a good caregiver. This is one of the best articles on caregiving I’ve ever read.

The blogger says: “There is an old saying about not letting the perfect drive out the good, a notion that I think is essential to providing sensible and loving care to an aging parent and maintaining one’s sanity during the process.”
Here’s a link to the New York Times blog post:
http://newoldage.blogs.nytimes.com/2009/01/22/th-good-enough-daughter/

Learning to Be Good Enough
By Jane Gross
January 22, 2009, 12:16 pm
New York Times

The New York Times post refers to a blog titled “A Good Enough Daughter” by Sara Myers. Here’s a link to that post:

“A Good Enough Daughter” blog
by Sara Myers

http://www.silverplanet.com/blog/good-enough-daughter

You can read a slightly different version of this explanation by Sara Myers here:

“I Can’t Make Everything OK”
By Sara Myers

http://www.silverplanet.com/blog/good-enough-daughter/i-can-t-make-everything-okay/5611

All of these are worth checking out!

POLST, DNR, Advance Health Care Directive, etc.

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A few of us braved the rain Sunday night to attend the support group meeting.  I thought I would pass on one of the short discussions some of us had, and give you some related links to forms and info available online.

Cheri said that several people told her she could get a DNR (do not resuscitate) form from her doctor.  Well, she asked two doctors and neither had such a form.  She said that she had been advised to get such a form for her husband and sign it because if you don’t have such a form emergency medical personnel can go down a path the patient and family don’t want to go down.  However, Cheri pointed out that even if you have a signed DNR, the healthcare POA (power of attorney) can always say “we want resuscitation efforts to be made.”  Having a signed DNR gives the healthcare POA some flexibility.  Not having a signed DNR puts all the responsibility on the POA and gives him/her no flexibility. (I hope I’ve adequately described the point.)

Ted and I talked about our preference for the POLST form to a simple DNR form.  POLST stands for Physician Orders for Life-Sustaining Treatment.  It is signed by an MD, and serves as an MD’s instructions for what sorts of treatment anyone has determined he/she wants to have.  Paramedics, RNs, and MDs will accept and take instructions from the POLST.*  The POLST goes through a few more scenarios than just the person-is-not-breathing-and-has-no-pulse scenario.  For example, it asks what level of treatment should a person have — full treatment, limited treatment, or comfort measures only.  It asks if antibiotics are to be included in comfort measures.  It asks if intubation is to be included with full treatment.  It does NOT have as many scenarios, however, as “Five Wishes.”  And, in contrast with “Five Wishes,” the POLST is signed by an MD so these are “doctors’ orders.”

You can find general info on POLST at polst.org; this is a national effort that started at Oregon Health & Science University.  The POLST has recently become usable in California. State-licensed facilities are now being required to have a POLST form on all residents.  [Editor’s note:  you can now find California’s form at capolst.org.]

The POLST is a great form of anyone with a neurodegenerative condition or terminal illness to have completed and signed by his/her MD.

For the non-neurodegenerated, there’s the Advance Health Care Directive.  In our state, the California Medical Association has an Advance Health Care Directive Kit.  The cost is $5.  I have a few more free copies left; let me know at the next support group meeting if you want to get a copy from me.

This question-and-answer from the California Medical Association website may be of interest:

#18 Q:  I have reached a point in my life that I don’t want the paramedics to give me CPR. Will this Advance Health Care Directive keep this from happening?

#18 A:  If the paramedics are made aware of your Advance Health Care Directive before they start resuscitative efforts, and the Advance Health Care Directive clearly instructs them not to start these efforts, your wishes should be respected. You may also want to complete the “Prehospital Do Not Resuscitate (DNR)” form and obtain a “Do Not Resuscitate– EMS” medallion approved by California’s Emergency Medical Services Authority. You may order copies of the DNR form (which includes instructions on ordering the medallion) from CMA publications.

If someone signs a DNR form, it means that they do not want CPR used.  The DNR form for use in California can be ordered from the California Medical Association.  The cost is $2.  The CMA has a two-page brochure on the effectiveness and risks of CPR.

As for the Five Wishes document….  As far back as 2005, one of our founding group members, Storme, discusses it at most support group meetings she attends.  She has completed the form herself, and worked with her mother to complete the form.  Hearing Storme, many other group members have completed the form, including me. More recently, I heard Dr. Melanie Brandabur, a neurologist at The Parkinson’s Institute in Sunnyvale, recommend it.

Five Wishes is useful to fill out, and review with your healthcare POA.  This presents many scenarios, describing in detail things you may and may not want.  It addresses your medical, personal, emotional and spiritual wishes.  It is an invaluable resource for your healthcare POA, if you are unable to communicate your wishes.  The cost is $5.

Beneath my name, I’ve provided all the links you’ll need.  Here’s where you can get general info, find the POLST form for CA, learn about Five Wishes, order the CMA AHCD Kit, order the DNR form, and all the stuff described above.

Happy planning!
Robin

* Paramedics and RNs cannot take instructions based on a Living Will and they may not take instructions from any other Advance Directive you may have.  In the absence of a DNR or POLST, paramedics may be required to perform CPR if they have no MD’s orders to the contrary.

—————————

POLST:
polst.org

Patients and Families FAQ on POLST:
www.ohsu.edu/ethics/polst/patients-families/faqs.htm

POLST form for CA:
[Editor’s note:  the form is now at capolst.org]

Five Wishes from Aging with Dignity:  (cost is $5)
www.fivewishes.org/

Info on the CMA Advance Health Care Directive Kit:
www.cmanet.org/publicdoc.cfm?docid=7&parentid=4

View a “Sample” Copy of the CMA AHCD Kit:  (unfortunately you can’t print a usable copy)
www.cmanet.org/upload/AdvDir2003Finalwatermarked.pdf

Order the CMA AHCD Kit:  (cost is $5)
www.cmanet.org/bookstore/product.cfm?catid=12&productid=154

Order the Pre-Hospital Do Not Resuscitate (DNR) form:  (cost is $2)
www.cmanet.org/bookstore/product.cfm?catid=12&productid=59

View the CMA’s brochure on CPR:
www.cmanet.org/upload/cma_cpr_brochure.pdf

Family Caregiver Alliance Fact Sheet on end-of-life decision making:
www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=401