A Caregiver’s Near-Suicide

An article on “caregiver burden” in the March 12 issue of JAMA (Journal of the American Medical Association) opens by describing a painful, nearly fatal, situation:

Mrs. D, at 84 years of age, was the primary caregiver for her functionally impaired 86-year-old husband and shot herself 3 times in a suicide attempt. Mrs. D’s family did not perceive the severity of the caregiver burden as a family picnic was planned for the day of her attempted suicide. Mrs. D did not leave a note and later stated she fully intended to kill herself. While recovering in the hospital, she expressed relief at not having caregiver responsibilities. Two months later, her husband died, which Mrs. D described as a release for her.

What stands out for me as a psychiatrist is that despite the depth of depression that led to Mrs. D’s potentially lethal suicide attempt, when she no longer felt trapped in the caregiver role, suicidality and depression lifted without psychotherapy or medication. Changing the situation provided the “cure.”

Years ago I had a related experience in my clinical practice. A man in his early 50s had become profoundly depressed (though not suicidal) after losing his job. We had a good relationship and he was very cooperative in his treatment, which involved different forms of psychotherapy, multiple trials of medications, and environmental manipulations.

Nothing worked.

But two years later, after a friend found a job for him, his depression lifted almost instantly. He did well at the new job and had no recurrence of depression during the several years we stayed in contact.

As much as 90% of the in-home long-term care provided to adults with chronic conditions is provided by unpaid family members and friends. The AARP Public Policy Institute and the United Hospital Fund surveyed a representative sample of 1,677 caregivers who had provided unpaid care to a relative or friend 18 or older during the past year. Their first report – HOME ALONE: Family Caregivers Providing Complex Chronic Care – documented just how demanding the caretaking role can be. Almost half of the caregivers performed medical and nursing tasks like administering medications and caring for wounds as well as “non-technical” tasks like bathing, dressing, and preparing meals. Few received training for the medical and nursing services they provided or inquiry about the burdens of caretaking from the health professionals involved in the patient’s care. Forty percent of the caregivers who performed medical and nursing tasks reported feeling “down, depressed or hopeless” during the past two weeks. For those who performed five or more medical and nursing tasks, more than half experienced these feelings.

During my residency training in medicine and psychiatry, I had the good luck to have received supervision from skilled social workers on how to work with my patients’ families. Then, during the years I worked at a neighborhood health center, I got to make home visits with experienced public health nurses. In my clinical practice, some of the most useful interventions I made were with the parents, siblings, and adult children of patients with severe psychiatric illnesses. These family caretakers depended on me for the direct services I provided to their family members, but I depended on them for the direct services they provided to my patients. I rarely saw the patient more than one hour a week. That left 167 hours outside of my office! I was grateful to the social workers and nurses who taught me to recognize the crucial role of family caregivers, to coach them in areas that required new skills, and to do my best to support their ongoing efforts.

A more recent AARP/United Hospital Fund report on Employed Family Caregivers Providing Complex Chronic Care revealed that employed caregivers are providing as much complex care as unemployed caregivers do. Given that they were juggling employment along with caregiving, it’s not surprising that they reported higher stress levels (61%) than were reported by those who were not employed (49%).

The AARP and the United Hospital Fund make a series of practical recommendations directed to federal and state policy makers, hospitals and other health organizations, accrediting bodies, health professional educators, and hands-on health professionals. With the aging of the baby boomers and the continuing efforts to reduce the use of hospitals, family caregivers will be even more important in the future. Health and the functioning of the health system depend on them.

If the physicians, nurses and others involved in Mr. D’s care had drawn out Mrs. D on how the caretaking role was affecting her, the suicidality that nearly led to her death might well have been averted.

[The March 12 issue of JAMA includes an excellent editorial on Easing the Burden of Family Caregivers and an excellent article by a young physician whose father was developing dementia, about the Caregiver-Centered Care she wished her mother, who was caring for him, would receive. On the same topic, see The Critical Role of Caregivers in Achieving Patient-Centered Care in the August 14, 2013 issue of JAMA. And, on Over 65, see Carol Levine’s posts on caregiving here, here, and here.]

Jim Sabin, M.D., 75, is an organizer of Over 65, a clinical professor of population medicine and psychiatry at Harvard Medical School, and a Fellow of the Hastings Center.

5 Responses to “A Caregiver’s Near-Suicide”

  1. Carol Eblen

    All that you say in your Article is true. Care giving will become an even greater problem as Medicare policy works to keep the elderly and dying Medicare/Medicaid patients with terminal diseases out of expensive Hospital care in ICU and CCU hospital units and out of skilled nursing home units. These patients will die on Hospice in their own homes or in private-pay nursing homes. Their Hospice care-givers in “residential” hospice count on the unpaid family member or a privately-paid person to be the primary caretaker of the dying patient. In private residential Nursing Homes, Hospice care supplements the medical and custodial care that the private-pay patient receives. Medicaid patients, under law, receive the same medical and custodial care as is provided the for-pay patients under state laws except, of course, private-pay patients, if they can afford it, can pay the nursing home for a private room etc.. . . . .

    Also, competent and unpaid family care givers may be in short supply as our culture changes and family members live thousands of miles away in other cities and countries. or are disinterested or unable to provide care. Mom and Dad so often are alone in their old age and have to try to take care of each other. Also, just as there are millions of people driving alone in their automobiles, there are millions of people living alone in their homes who may not have unpaid care takers to take care of them when they are young or very old and in the process of dying from a terminal disease.

    In this instance, where both the caretaker and the patient are elderly, it can be seen that not even Medicare Hospice Care or Home Care would provide enough help to take the pressure off of this elderly wife who selfishly but humanly wanted to commit suicide to get off duty and out from under the pressure of her husband’s illness and her inability to meet his needs.

    As technology is developed to extend life spans, living as “long as possible” if one chooses to live as long as possible becomes very expensive for Medicare and their private partners, Big Insurance, and also creates new problems for the aged, their families, and society as a whole.

    It appears that the elderly/disabled on Medicare/Medicaid will continue to be targeted by Medicare and big insurance for budget constraints and in the future, elderly/disabled patients on Medicare will not live as long as is possible, even if they want to, and only as long as is financially and medically feasible for Medicare and its private partners, the Advantage and GAP insurers. Involuntary euthanasia of the elderly Medicare/Medicaid patients is already a reality when unilateral covert/overt DNR Code Status is misused to limit and withhold hospital treatments that the hospitals KNOW will not be reimbursed by CMS and their private partners, Big Insurance.

    It looks like Hospice will increasingly provide more care takers in the future for the growing population of elderly/disabled on Medicare/Medicaid when Hospice is no longer an elective but is the only option available after curative care is abandoned and is no longer reimbursed to physicians and hospitals by CMS and its private partners, Big Insurance.

    The trial by CMS in 2014 that will permit “original” Medicare patients with specific diseases and cancers to be on both curative care and hospice care at the same time (concurrent entitlement) is for the purpose of referring terminal patients to Hospice much earlier in the course of their terminal illnesses with the view that these patients will die on Hospice care in their own personal residences or in private for-pay residential nursing homes and save Medicare and private big insurance millions of dollars in Hospital end-of-life costs.

    How will Hospices who are a part of the trial recruit patients for concurrent entitlement? They will get $400 extra each month from CMS for each patient and Nursing Home who agrees to “concurrent entitlement.” Will informed consent to receive both standards of care imply informed consent to the hastening of death under the Hospice entitlement because of the agreement to unilateral DNR Code Status when hospitalized? .

    If the trial is successful, and Congress changes the law to permit concurrent entitlement to Curative Care and Palliative/Hospice Care, will this mean that Hospice will no longer be elective under original Medicare because Hospice will be the only alternative standard of care available when curative care is no longer justified and reimbursed by Medicare and big insurance?

    -Will the Curative physicians be able to deliver palliative care and hospice care and be reimbursed for both standards of care if they apply and are certified to provide the Hospice entitlement? It will be the treating physician who will certify the terminal patient to Hospice. Will Hospitals who own the practices of physicians also own Hospice organizations?

    Is this trial about improving patient-centered care or ensuring profit-centered care? Was the separate Hospice Entitlement a mistake to begin with? Wasn’t palliative care and comfort care always a part of curative care to begin with?

  2. Angie Wilt

    I have cared for my 81 year old husband who suffered a major stroke six years ago. The stress is much more than I can handle on many days. I do it all here – inside and outside. He gets around on a scooter, has lost all use of his right arm and hand, is very depressed and mostly uncooperative.

    I lost my job in 2010 and have been home with him ever since. We are financially doomed. I cannot afford to have someone come to even check on him if I were to go to work.

    In the last year I underwent three major surgeries due to a car accident. My recovery was long, difficult, and I did most everything by myself. Besides a little help from friends the only assistance I had was home care provided by his Advantage insurance plan. Their home care aides came 2 to 3 times a week to give him a shower. They stopped doing this when they feared that Medicare would no longer reimburse them for this service!!

    The visits by this team of wonderful women contributed to my husband’s well-being. It helped his depression, and his personal hygiene. I had to assume this part of his care and it was almost impossible for me to do as one of my surgeries was a 2-level C-spine disc surgery, and the other a total shoulder joint replacement.

    The fear of Medicare and their lack of reimbursement has resulted in more medical hardships for patients and their caregivers who need help. I was told that as long as I could put husband in a car and take him to his medical appointments he was NOT completely home-bound and they would no longer provide a home care service – even with an order from his physician.

    Yet, we continue to pay Medicare premiums, deal with undue stress these policies have created, and worry about what will happen the next day. Living life waiting for the other shoe to drop is depressing for the caregiver who finally gives up and it all goes to hell.

  3. Larry Garcia

    I am 68 and have been my wife’s full time caregiver for over 11 years. She depends on me for everything since she is confined to a wheelchair. Having suffered a debilitating stroke, she is both mentally and physically impaired. Her daughter (my step daughter) used to help out during the first years but that dwindled to an occasional 3 hour break on Sundays. Now she has totally quit the visits and on occasion will take her mom to lunch. It is not so much the breaks I miss. It is the isolation and the knowledge that everyday will be the same in caring for her. After so many years I have come to the conclusion that I no longer value my quality of life and wonder why I even continue to care for her. I will never abandon her. My question? Why do immediate family members turn a blind eye to the needs of a close relative. I asked my daughter to watch my wife and she declined. I didn’t expect this from my family as well. Turning to Jesus was at first a god send but after so many years I feel that he has forsaken me and my plight.

    I have written a novel entitled, “Edge of Infinity” and my web site is http://www.mykingdomisofanotherworld.com/

    I was hoping that royalties from this book would supplement our retirement income but interest has be slight even though I received a four star editorial review and four reviews on Amazon.com are positive (5 stars). I even sent a copy of my book to Ellen hoping that she might see my story as a human interest topic. Even giving my book a mention would have done wonders for its existence. A local book store, Tattered Cover has it on their shelf but it is found in Metaphysical Fiction. Who even looks there? If you would like to give this caregiver something to hope for, reading my book would be a good start. I am not suicidal but the thought does cross my mind at times. After 11 years I never imagined I would last as long. Without help the next 11 years will probably be impossible.

    larry don garcia

    • Richard Careaga

      Larry, I can tell you that you are not alone in feeling trapped in Groundhog Day, that this is what the rest of your life looks like. I feel the same way.