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
In my view, everyone over the age of 18 ought to have appropriate health care and financial documents that will assign a trusted person to speak for them should they, for whatever reason, be unable to speak for themselves. But most people wait until they’re well into middle age before taking care of this important legal work. For those who die young, or are disabled because of an unexpected event such as a car accident or ill-fated dive into an unfamiliar lake, it’s too late. Their families may have to fight in the courts and in hospital wards in order to carry through with the decisions that they believe this young person would have wanted them to make.
Dear Carol: My mother, who was in her early 80s, was doing well except for arthritis and high blood pressure. Then she fell and broke her hip. After surgery, she seemed not just foggy but completely irrational. The doctor said that this wasn’t unusual for someone her age considering what she’d been through and that she’d get better. Mom spent several days in the hospital and was then moved to a nursing home to recover and receive physical therapy. The staff was terrific with Mom. When I asked them if Mom would recover mentally, they were non-committal. They didn’t want to say that she wouldn’t but they seemed less sure than the doctor. As the weeks went by she didn’t improve mentally, though she was doing okay physically. The, five weeks after the surgery, she suddenly died. It’s hard to accept. How common is this? – Terri
Many adults sit by the side of their dying loved ones, sometimes for days, working on accepting the loss of their physical presence and what this loss means in their lives. Then, a spouse, parent, child or friend suddenly rallies, becomes more stable and in some cases wants to talk. We grasp at what seems to be a turnaround and sigh with relief. They are going to hang on for a while; or are they?
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.
Dear Carol: As my parents aged, we all thought that we were taking care of the legal issues necessary so that I, as Durable Power Of Attorney (DPOA) could handle anything that came along with their finances. Dad died two years ago, and Mom and I got through it. Now, Mom’s health is failing. She wanted me to change the account where her Social Security is deposited, so I called and found out that the DPOA would not allow me to do that. Fortunately, Mom’s memory is still good, so she was able to go to the attorney with me and she had me assigned as Representative Payee. The attorney told us that if Mom had a health issue where she couldn’t have answered the questions needed, I wouldn’t have been able to make the necessary changes. For us, that would have been merely inconvenient, but some people could have more important reasons for making these changes. Your column seemed to be the best way that I could think of to get the message out. Thanks for providing a great service. Janice
Dear Carol: My dad had been fighting cancer for years. Eventually, there was no more hope for a cure, so we agreed to ask for hospice care to keep Dad comfortable during his last weeks of life. He surprised us by doing well under hospice care, living beyond the doctor’s expectation, but, of course, he eventually died. What bothers me is that I wasn’t with him at the moment he passed. He was in a nursing home at the time and the staff was wonderful. They called the family together when it was determined that Dad was close to the end. My siblings and I sat with Dad for two days around the clock. We brought in food at first but as the wait stretched out we took turns going to my nearby home to shower and nap. Dad died during my nap. I still feel devastated and guilty that I wasn’t there when he passed. I go to hospice grief counseling and that is helping, but I’m wondering if you have any words of comfort to offer? Rhonda
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.
Dear Carol: My mom is 94 years old and frail. She has a weak heart and bad lungs, yet she hangs on. I’m a 73-year-old widow. I took care of Mom at home for over five years, but two years ago I placed her in a nursing home. I felt terrible guilt about doing that because I’d promised her that I wouldn’t, but my own health was deteriorating and I couldn’t physically transfer her anymore. There was no other choice. Apparently, we both had outdated ideas about nursing homes or we would have done this sooner since we are both pleased. But Mom is now bedridden and can barely murmur a few words. There is no quality in her life that I can see and I find myself wishing that she could just let go. Then I feel ashamed. She’s very religious and isn’t afraid of death, and neither am I, but I'm still confused about my feelings. Guilt and shame nag at me even though I know that her current situation is miserable. How do I deal with this feeling of disloyalty about wanting her life to end? SL
Our culture is steeped in language that makes accepting the terminal diagnosis of ourselves or a loved one more difficult to accept than it needs to be. Doctors say, “I’m sorry, there’s nothing more we can do. You might want to look into hospice care.” Patients tell their doctors that they want “aggressive treatment,” until there is nothing else that can be done, then they will go on hospice care.The crux of these conversations is that medicine will do everything possible and then when you give up you will go on hospice care.