Many people would consider losing their sight one of the worst potential losses that they could encounter. While most of us will not suffer from complete blindness, millions currently suffer from some form of visual impairment, with numbers growing rapidly as we age. According to the National Eye Institute (NEI), older adults represent the majority of the visually impaired population, with visual impairment included among the 10 most prevalent causes of disability in the U.S.
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 email@example.com.
You're close with your parents and you see them needing help. You've watched their decline, but so far you've handled it and they've stayed in their home. You've hired out the yard work and much of the housework. But it's time now for something different. Dad's often confused and Mom's diabetes isn't being cared for properly. You are wondering, should they move in with you? Years back, having one or both parents move in with the family was relatively common. My grandmother moved in with our family when my brother and I were teens and our little sister was a toddler. My parents built a new home that could accommodate privacy for Grandma as well as a family with teenagers and a toddler. It worked.
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 web site devoted to the elderly and their caregivers. - Carol Heilman
Of course, we don't always make the right call regarding every circumstance. But we do our best. I'd hazard a guess that the most painful decision for most of us to make is whether or not it's in our loved one's best interests to place him or her in a nursing home. If it is also in our best interest, then the guilt looms even larger.
Elders can have an especially hard time with the holiday season. While aging and maturity can bring the wisdom of years for many people, there are inevitable losses that come to even the most healthy individuals. Many of these losses are emotional and social in nature. Spouses become ill or die. Other aging relatives and friends become seriously ill, or die. Neighborhoods change, often leaving even those well enough to remain in their own homes feeling friendless and isolated. The holidays can bring this isolation and a feeling of loneliness to a head.
News via PBS: "The first-of-its-kind campaign, organized by the AARP Foundation and the National Association of Area Agencies on Aging, aims to help seniors assess their social connectedness and suggest practical ways they can forge bonds with other people...Addressing stigma will be a priority. ..'Who wants to admit that, ‘I’m isolated and I’m lonely?' said Dallas Jamison, a spokeswoman for the National Association of Area Agencies on Aging.'It’s a source of shame and embarrassment.'”
Dear Carol: My dad is 73. He’s healthy, vital and lives in the same home that I grew up in. Dad volunteers for the Retired Senior Volunteer Program (RSVP) and loves it. He even met a woman who is also volunteering and they have fun together. Yet, I have people who ask me when I’m going to make Dad get out of that house and move somewhere safer. I know that many of these people have parents with health problems that affect their ability to live alone. I’m sorry for them all but I’m tired of being pressured to take over Dad’s life just because he’s in his 70s. I’m not neglecting Dad. It’s true that after mom died 10 years ago it set him back for a time, but he eventually moved forward. How do I let people know that I’m sad for them if they have parents with health problems but I’m happy about Dad and not going to try to “make” him do anything he doesn’t want to do. That would, to me, seem disrespectful, to say nothing of the fact that he’d refuse anyway. How do I respond to this pressure? PT
...Few of us can measure up to the fantasy—caregivers least of all. There's so much denial of today's reality in these images resurrected each holiday and thrown at us by every means, from advertisements to blockbuster movies. These images feed expectations that are impossible to meet. The "average" family is vastly different than the average family of yore. Today's families are often a patchwork of children, step-children, step-in-laws, step-siblings and elders of varying degrees of relationship and health. Add to that the fact that people marry later and often have children at an older age, and you've got a package that often includes young children, teenagers, young adults, forty-something caregivers, a parent who's had a stroke or two, and maybe one with dementia.
Loneliness can be a plague for the elderly and ill. Yet visiting with someone who doesn’t feel well, and may have limited cognition, can be tricky. Some nervousness or reluctance is natural, but a few considerations can help to make things go smoothly.
Most people are aware that transition to facility care may be hard on elders but many don’t realize that it can be hard on caregivers, too. We’ve tried our best but our best is no longer enough. Irrational as it may seem to others, at this stage we may feel like we’ve failed.