...What needs to be done to give men the visibility and support they deserve? Society must catch up with reality. Since men have always been providing care to some degree and will continue to do so in increasing numbers, the fact that a large percentage of family caregivers are men should become recognized as the norm. Strong men are making this happen by overcoming a perceived threat to their manhood and allowing themselves to become visible in public and online. Dedicated women are also spreading the word.
If ever there’s a group of people who suffer deeply from unearned guilt it’s caregivers. Whether you’re the parent of a vulnerable adult, an adult child of aging parents or the spouse of a vulnerable adult, you are bound to have your “if only” times where you are sucked into the quicksand of guilt. The reality is that most things you could have done differently wouldn’t have made a huge difference overall. Even if another approach would have made a difference, you can’t go back. Staying mired in guilt is counterproductive for you as well as your care receiver. While some reasons caregivers feel guilty are unique to their situation, many are commonly shared in caregiving. Below, I’ve listed four causes of unearned guilt that most caregivers share, along with some ideas that I hope will help you look at your situation more realistically:
An amazing book of stories that will touch your heart and encourage you, especially if you are a caregiver. Carol Bradley Bursack also has an excellent website devoted to the elderly and their caregivers. - Carol Heilman
Many people have heard of hospice care but they mistakenly think that it’s just a way to help cancer patients be more comfortable at the end of their lives. Fewer people have heard of palliative care, and they may have no idea what it is. The truth is that hospice and palliative care are related but used for different reasons at different times, and everyone should be well-versed in what they offer. Here, we’ll clarify some points of confusion.
“At Senior Lifestyle Advantage magazine, we speak to those who are 55 and older, encouraging them to live a healthier, more balanced life with hope. Each issue shares expert advice, easy recipes, travel, and feature stories about living with joy.”
These words are the short version of the message that Judith Stanton, founder and publisher of Senior Lifestyle Advantage, wants to spread. Stanton’s magazine focuses on the ways in which aging can be positive and fun, a viewpoint that is sorely needed at a time when ageism marginalizes a large percentage of our population.
In an example of ancient meeting modern, researchers at UCLA and their colleagues tested whether or not yoga and meditation could alter the brains of some people with mild cognitive impairment (MCI) to help them think more clearly. MCI is often a very early stage of Alzheimer's disease. Their answer was yes. A technique using a yoga pose while meditating was shown by modern methods to be as effective as memory enhancement training (MET). The results of the practices were scientifically proven by using resting-state functional magnetic resonance imaging.
The stories in this fine book showed us how others have gone through similar things with their families and that is somehow reassuring. There are some helpful suggestions but mostly there is the recognition that others went through the same thing. All we can do is our best. That is greatly reassuring during these difficult emotional times. If you are a caregiver, this is a must read. - Delores Edwards
This is National Healthcare Decisions Week (formerly "Day"). This book is a wonderful guide for deciding what you would want in the future. (Full disclosure: I wrote the foreword to the second edition).
"Code Blue!" A voice cries out in the Emergency Department. "Is there a doctor who can 'tube' a patient in Cardiac Cath Lab?"
These beginning lines of "Wishes To Die For: Expanding Upon Doing Less in Advanced Care Directives," by Dr. Kevin J. Haselhorst, prepare the reader for an adventure in self-examination.
The first chapter, titled "Self Determination," describes the author's own internal battle to balance his training as a doctor who cures at all costs with the wishes of his patients. Through his book, Haselhorst gently encourages us, the potential patients, to examine our right to decide how and under what circumstances we will be allowed a natural death.
In "Wish 10: Pre-Stamp Three Coins in the Fountain," Haselhorst writes, "I cannot remember the last time that I wished for a feeding tube, dialysis or ventilator." The author is not negating the importance of these treatments, but he is stressing that we must keep a record of our wishes up to date. He challenges us to examine what we really want at each stage of life. Any of the above efforts to increase our chances for survival may be a correct choice under some circumstances, but there often comes a time in our lives where less treatment is in our best interest. Unless our current wishes are made known, we may not be able to choose the manner in which our life comes to a close.
While reading the book I highlighted, underlined, and clipped colored markers on pages, thinking to myself that I must include this quote or that paragraph as I wrote. Before long, I realized that scores of quotes would be needed to do this work justice. The complete book with everything in context is needed before the reader can grasp the manner in which Haselhorst guides readers through their own journeys of self-examination.
That being said, what Haselhorst writes toward the closing of his book comes close to summing it up. He says that, "Death with dignity is only realized through the empowerment attained from engagement (of the patient)."
To address this belief, Haselhorst has designed a wristband similar to the well-known Livestrong Foundation wristband. The difference is that this band is bright yellow on one side and embossed with the words "Alpha care," meaning that the patient wishes doctors to keep trying all routes to keep him or her alive. The reverse side is a subdued blue and embossed with the words "Omega care" indicating the patient's wish to be allowed a natural death. With a twist of the wristband, a patient can communicate his or her current thoughts.
"Wishes To Die For" is an intellectual book, best-absorbed chapter by chapter. In my opinion, it's well worth taking this journey with the author to help us clarify our own beliefs. For more about Haselhorst and his work, visit www.wishestodiefor.com. The book "Wishes To Die For" is available at Amazon.com.
Previously published as a Minding Our Elders column for the Forum: Carol Bradley Bursack is the author of a support book on caregiving and runs a website supporting caregivers at www.mindingourelders.com. She can be reached at firstname.lastname@example.org.
It should come as no surprise that optimistic thinking is, for the most part, better for one’s health than negative thinking. In fact, negative thinking has been connected to poor health for some time. A recent study confirms what was previously suspected, linking optimistic thinking to the preservation of memory and good judgement. Both of those traits bode well for staving off, if not preventing, Alzheimer’s disease. Research conducted by the University of Michigan has linked an optimistic outlook to taking better care of ourselves overall, which may explain the effect that optimism has on Alzheimer’s risk.
According to the Alzheimer’s Association, in 2015 nearly 16 million family and other unpaid caregivers for people with Alzheimer’s disease and other dementias provided an estimated 18.1 billion hours of unpaid care, a contribution to the nation valued at $221.3 billion. This is with caregiving being valued at only $12.25 per hour. Similar statistics are posted by the International Alliance of Carer Organizations, which tracks caregiving in countries around the world. These statistics should make it glaringly obvious that family caregivers are indispensable to our nation as well as to the rest of the world. Without this so-called free care, global health systems would be in far worse trouble than they currently are.
People with Alzheimer's disease and other types of dementia often live in an altered reality that doesn't mesh with ours; yet their perceptions are as real to them as our perceptions are to us. That's a tough concept for many adult children and spouses of people with dementia to absorb. Validation of our loved one's reality is very often the kindest, most respectful response to their altered world that we can provide. In order to offer that validation without coming across as condescending, we need to understand the reason behind "therapeutic fibbing"—as validation therapy is sometimes called.
Hospice care is palliative care, but palliative care is not hospice. The difference between these two types of care is something that I have found difficult to clarify myself let alone explain to others. However, this care is a fundamental part of treating any chronic or terminal illness.