Category Archives: Caregiving – General

“Life at the end, caring in the face of loss” – Notes from video

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Last year I came across information about a short documentary film called “Life @ the end, caring in the face of loss.”  You might be able to find the 28-minute video online but local support group member Denise recommends not taking the time to watch it.  She says that there’s not much new information in the video.

Instead, she shares the “good reminders” the film raises, including:

* 40% of caregivers die before care recipients
* there are a diversity of approaches to caregiving
* how difficult the transition back to a normal life can be

Here’s what Denise says about the film….

Robin

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Denise’s notes on

Life @ the end, caring in the face of loss
documentary film by Jennifer Molina & Farah Dosani, 2011
Distributed by Health News from Florida Public Media
Running Time: 28 minutes

“Love knows not its own depth until the hour of separation.” Khalil Gibran

That’s a quote from a touching video Robin asked me to review. It really reiterates what we already know about caregiving, because we are caregivers, and this is just interviews with caregivers. There’s no new information here. I wouldn’t recommend taking the time to watch it, but there are a few good reminders.

Nearly 1/4 of the population in the U.S. is engaged in family caregiving. As the title of the film denotes, it is because of love – even in the midst of mourning. But sometimes the motivation for uber-caring is to avoid any guilt after the person’s passing. You must feel you did everything you could, right? Be careful. Remember that the physical, emotional and financial stress of caregiving causes 40% to die before the person they’re caring for. If you don’t look after yourself, you may not survive them.

We commonly think of spousal caregiving or parent/child situations, but the face of caregiving is diverse. This video shares a same sex couple dealing with HIPAA rules, a family in which the ill father and his wife must care for two small children and himself simultaneously, and the impact on extended family who step in to support a primary caregiver.

Worth thinking about is that the diversity of people engaged in caregiving means there is also diversity of approaches to it, and ways of coping with the illness itself. The diagnosis, and finding how to live with it, clarifies and forever changes who each of you are. You may find yourself intensely worried about your partner and what the future holds, while they take their own therapies and symptoms in stride. You may become annoyed that a respite volunteer doesn’t do things the way you do, when you should be enjoying the respite, itself. You may need some support to handle your differences.

Finally, there will be an adjustment to life after caregiving. If its been all-consuming for you, it will leave an enormous vacuum when its over. One of the film’s subjects found that sharing with friends and family, during their journey through illness, all she had learned while caregiving, gave value to the loss of her partner. It perpetuated her identity as a caregiver but offered social interaction, support and transition back to a ‘normal’ life.

-Denise

Mass Genl researchers look at anesthesia and cognitive dysfunction

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This post may be of interest to those who have a loved one with dementia, or those contemplating surgery with general (inhaled) anesthesia.

A Boston Globe newspaper article I circulated back in 2007 was about hospital-induced delirium.  In that article, Massachusetts General Hospital researchers drew attention to the anesthetic isoflurane as part of the cause of delirium.

Last week Massachusetts General Hospital distributed a press release on isoflurane; it causes Alzheimer’s-like changes in mammalian brains.  Researchers mention an anesthetic that may be safer — desflurane.

The full press release is copied below.

Robin

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www.massgeneral.org/about/pressrelease.aspx?id=1443

Massachusetts General Hospital Press Release
Study reveals how anesthetic isoflurane induces Alzheimer’s-like changes in mammalian brains
MGH researchers find desflurane may be safer anesthetic option for patients with Alzheimer’s disease
01/Mar/2012

The association of the inhaled anesthetic isoflurane with Alzheimer’s-disease-like changes in mammalian brains may by caused by the drug’s effects on mitochondria, the structures in which most cellular energy is produced.  In a study that will appear in Annals of Neurology and has received early online release, Massachusetts General Hospital (MGH) researchers report that administration of isoflurane impaired the performance of mice on a standard test of learning and memory – a result not seen when another anesthetic, desflurane, was administered.  They also found evidence that the two drugs have significantly different effects on mitochondrial function.

“These are the first results indicating that isoflurane, but not desflurane, may induce neuronal cell death and impair learning and memory by damaging mitochondria,” says Yiying (Laura) Zhang, MD, a research fellow in the MGH Department of Anesthesia, Critical Care and Pain Medicine and the study’s lead author. “This work needs to be confirmed in human studies, but it’s looking like desflurane may be a better anesthetic to use for patients susceptible to cognitive dysfunction, such as Alzheimer’s patients.”

Previous studies have suggested that undergoing surgery and general anesthesia may increase the risk of Alzheimer’s, and it is well known that a small but significant number of surgical patients experience a transient form of cognitive dysfunction in the postoperative period.  In 2008, members of the same MGH research team showed that isoflurane induced Alzheimer’s-like changes – increasing activation of enzymes involved with cell death and generation of the A-beta plaques characteristic of the disease – in the brains of mice.  The current study was designed to explore the underlying mechanism and behavioral consequences of isoflurane-induced brain cell death and to compare isoflurane’s effects with those of desflurane, another common anesthetic that has not been associated with neuronal damage.

In a series of experiments, the investigators found that the application of isoflurane to cultured cells and mouse neurons increased the permeability of mitochondrial membranes; interfered with the balance of ions on either side of the mitochondrial membrane; reduced levels of ATP, the enzyme produced by mitochondria that powers most cellular processes; and increased levels of the cell-death enzyme caspase.  The results also suggested that the first step toward isoflurane-induced cell death was increased generation of reactive oxygen species – unstable oxygen-containing molecules that can damage cellular components. The performance of mice on a standard behavioral test of learning and memory declined significantly two to seven days after administration of isoflurane, compared with the results of a control group.  None of the cellular or behavioral effects of isoflurane were seen when the administered agent was desflurane.

In another study by members of the same research team – appearing in the February issue of Anesthesia and Analgesia and published online in November – about a quarter of surgical patients receiving isoflurane showed some level of cognitive dysfunction a week after surgery, while patients receiving desflurane or spinal anesthesia had no decline in cognitive performance.  That study, conducted in collaboration with investigators from Beijing Friendship Hospital in China, enrolled only 45 patients – 15 in each treatment group – so its results need to be confirmed in significantly larger groups.

“Approximately 8.5 million Alzheimer’s disease patients worldwide will need anesthesia and surgical care every year,” notes Zhongcong Xie, MD, PhD, corresponding author of both studies and director of the Geriatric Anesthesia Research Unit in the MGH Department of Anesthesia, Critical Care and Pain Medicine.  “Developing guidelines for safer anesthesia care for these patients will require collaboration between specialists in anesthesia, neurology, geriatric medicine and other specialties.  As the first step, we need to identify anesthetics that are less likely to contribute to Alzheimer’s disease neuropathogenesis and cognitive dysfunction.”  Xie is an associate professor of Anesthesia at Harvard Medical School (HMS)

Additional co-authors of the Annals of Neurology study are Zhipeng Xu, MD, PhD, Hui Wang, MD, and Yuanlin Dong, MD, MGH Anesthesia; Rudolph Tanzi, PhD, MGH Neurology; Hai Ning Shi, DVM, PhD, MGH Pediatrics; Deborah Culley, MD, and Greg Crosby, MD, Brigham and Women’s Hospital;  and Edward Marcantonia, MD, MS, Beth Israel Deaconess Medical Center.  The study was supported by grants from the National Institutes of Health, the American Geriatrics Society, the Alzheimer’s Association and the Cure Alzheimer’s Fund.

Massachusetts General Hospital, founded in 1811, is the original and largest teaching hospital of Harvard Medical School. The MGH conducts the largest hospital-based research program in the United States, with an annual research budget of more than $750 million and major research centers in AIDS, cardiovascular research, cancer, computational and integrative biology, cutaneous biology, human genetics, medical imaging, neurodegenerative disorders, regenerative medicine, reproductive biology, systems biology, transplantation biology and photomedicine.

MDs know limits of treatment and the need to plan

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Some of us were talking at last night’s caregiver support group meeting about whether MDs, in general, seem in favor of or opposed to feeding tubes, and whether MDs will honestly answer a family’s question as to their advice as to what they’d do if their family member lost the ability to swallow.

There’s an article in last Saturday’s Wall Street Journal (wsj.com) about one person’s view of these matters.  The author, a retired physician, believes that doctors tend to choose less treatment at the end of life for themselves, and are reluctant to impose their “views on the vulnerable” when families ask “what would you do?”

Here’s an interesting statistic about CPR from the article:  “A study by Susan Diem and others of how CPR is portrayed on TV found that it was successful in 75% of the cases and that 67% of the TV patients went home. In reality, a 2010 study of more than 95,000 cases of CPR found that only 8% of patients survived for more than one month. Of these, only about 3% could lead a mostly normal life.”

Here’s a link to the article:  (there may be a charge to view the full article)

online.wsj.com/article/SB10001424052970203918304577243321242833962.html

Life & Culture
Why Doctors Die Differently
Careers in medicine have taught them the limits of treatment and the need to plan for the end
By Ken Murray
Wall Street Journal
February 25, 2012

It’s worth reading.

“Never too soon to talk about the future; it can be too late quite suddenly”

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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 first chapter, which is about starting the conversation about future care. Here are Denise’s take-aways, which are not specific to adult children talking with aging parents about the future.

Robin

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Denise’s Notes to

Chapter one – “Get Ready, Get Set”
of the book “How to Care for Aging Parents”
by Virginia Morris and Robert Butler
2004

“It is never too soon to talk about the future, although it can become too late quite suddenly.”

Wise words from the authors. Chapter one, ‘”Get Ready, Get Set,’” begins by addressing how hard it can be to get these conversations started with any family member.

If you’re having difficulty, they suggest several ways of coming at the topic indirectly. Try, for example: “There was an interesting article in the paper about in-home care. Have you thought about what kind of help you’d feel comfortable with or where you’d like to live?”

It’s usually necessary to revisit topics you’ve already discussed. It’s not worth arguing between you. If you are repeatedly unsuccessful, ask another family member or professional to speak with them. As frustrating as it is, sometimes a person is more willing to have that conversation with another of their offspring, a sibling or in-law, even someone outside the family like a doctor, lawyer, or clergy.

If you get them talking, remember it’s all about them. Understand that they have fears about growing old, feeble, incompetent, and being a burden. Don’t be judgmental or dismiss their hopes. Instead, find out where they see themselves living, how they want to handle daily life when they can no longer drive, cook, bathe or dress, and if they are okay with relocating. Try to get a picture of their expectations. Your ultimate goal is to make decisions they will feel comfortable with so transitions will be easier for them to accept and adapt to.

You won’t be able to cover everything in one go or finalize some arrangements until a crisis occurs. If you’re already facing a crisis and haven’t yet made arrangements, the authors do an excellent job of identifying local resources to put services in place. Of course, they would prefer you familiarize yourself with these ahead of time.

* Area Agency on Aging – Call the Eldercare Locator 800-677-1116 or www.eldercare.gov

* Local Senior Centers, Community Groups and Religious organizations (Jewish Family Services, United Way)

* Local Hospital Discharge Planner

* Employee Assistance Plan eldercare information and referral (check with your HR department)

* State Long-Term Care Ombudsman’s Office represents residents of nursing homes and their families

* Medicare’s web site and hotline 877-267-2323 or www.medicare.gov

* Foundations and Organizations for a particular disease

* Geriatric Care Manager to assess needs or take over care almost entirely

* 211 – Many states are establishing human service information lines contacted by dialing 211.

If you’’re wise enough to be talking ahead of time you are in a good position to purchase long term care insurance, get on wait lists for special services, nursing facilities or senior housing communities; file paperwork requiring lead time, like VA benefits; prepare wills, powers of attorney, advance directives; protect assets; sign HIPAA forms; choose a health care proxy; or remodel a home to prevent falls.

All that advance planning produces a mountain of paper. The authors have an extensive checklist of documents and information to gather and file where family members can lay hands on them easily. Someone should organize them and keep them that way – and it doesn’t have to be you! Enlist the help of anyone you trust with personal documents who has the inclination and ability.

The remainder of the chapter are practical tips for keeping track of someone else’s healthcare details. This is especially important for long-distance caregivers. With at least 1/3 of family caregivers at least an hour away (usually more), their special circumstances are specifically addressed. Amid the list of good advice there are several suggestions as to who might be enlisted to keep an eye on things, including neighbors or relatives living nearby; post office, gas and electric companies, and people who deliver home-bound meals are sometimes trained to watch for trouble at homes where elderly people live alone; even a bank manager who could call you if accounts are being drained or sitting idle (indicating bills are not being paid).

Primary of this practical advice is to have a back-up plan for the primary caregiver. Arrange for someone else to step in on short notice, for your parent to go to a senior center or adult day-care center, or for her to go to a senior residence for a temporary stay. Too many caregivers don’t have a Plan B and are caught in dire straights when life takes an unexpected turn.

Caregiver guilt (excerpts from a book on caregiving)

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This short article on caregiver guilt is an excerpt from the book Staying Afloat in a Sea of Forgetfulness: Common Sense Caregiving (stayafloatbook.com).  The author is Gary Joseph LeBlanc.  The article is from a recent issue of Preserving Your Memory magazine.

This excerpt summarizes the article:

“Try not to berate yourself about areas in which you think you may have failed. Instead, focus on all the positive things you accomplished along the way. Think of the enhanced quality of life you single-handedly brought to your loved one. Remember, you will remain in their heart forever.”

The full article is copied below.

Robin

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www.alzinfo.org/wp-content/uploads/2011/08/PYM_Summer11.pdf

Caregiver Voices
Coping with Caregiver Guilt
Preserving Your Memory
By Gary Joseph LeBlanc
Summer 2011

Guilt is an overpowering and complicated emotion but appears to have a purpose in the life of human beings. When knowing we’ve done something wrong, by all means, we should experience a touch of shame.

If you are a caregiver there will be times when waves of guilt will wash right over you. There doesn’t have to be any wrongdoing to cause this. The simple reason is that you care so deeply that you never feel adequate performing this role.

For example, you may finally get a chance to do something for yourself. Let’s say you go out to get an overdue haircut. The whole time you’re sitting in the salon chair you can’t stop thinking about something bad happening while you are away. You rush straight home, instead of taking advantage of the rare and well-deserved respite break. Even when you find, to your relief, that all is well, you still experience that guilt monster.

Then there’s always that “little white lie.” You may be visiting your loved one at his or her adult living facility or the hospital. You need to be at work in a couple of hours, but you like to have at least one hour to yourself before you begin your shift. Suddenly you find yourself saying, “My boss asked if I could come in early today so I’m going to have to leave now.” Meanwhile, throughout your whole work shift, you once again feel guilt doing somersaults in your stomach.

There’s not a caregiver out there that doesn’t worry about whether or not the job he or she is doing is good enough. Even after your loved one has passed you will go through a stage of beating yourself up, wondering whether or not there was something more you could have done for your loved one.

The strong emotion of guilt that caregivers endure is just part of human nature. Go to a caregiver’s support group and ask all those surrounding you. They will tell you that they are experiencing or have experienced the exact same feelings. All caregivers face the same unattainable goal of sparing their loved ones the pain that comes with any disease. Everyone’s desire is to provide a compassionate passing.

Deep inside, we all believe that we, as caregivers, are to some degree responsible for what happens to our stricken loved ones in the end. Sadly, some endings can be downright cruel, not only to the one afflicted with the disease but also to the ones that have to witness the perishing.

Caregivers get hit with a double-whammy. While trying to wade through all the sadness and grievance, they get swept away by a pronounced tide of guilt. But take heart; this guilt trip will slowly start to fade, finally leaving you with just the normal amount of grief, which is bad enough.

With the passing of your loved one, life has just spun around 180 degrees. Everything you have trained yourself to do has come to a complete halt. That grueling fast pace lifestyle you lived has just stopped itself on a dime. It’s almost as if you have to learn to breathe all over again.

Try not to berate yourself about areas in which you think you may have failed. Instead, focus on all the positive things you accomplished along the way. Think of the enhanced quality of life you single-handedly brought to your loved one. Remember, you will remain in their heart forever.

Unfortunately, guilt is a normal emotion in life. These bouts of guilt you feel only prove what a caring individual you truly are.

[This is] an excerpt from Gary Joseph LeBlanc’s book, “Staying Afloat in a Sea of Forgetfulness: Common Sense Caregiving,” which is now available in an expanded edition. You can order the book at stayingafloatbook.com