Use Our ContentThis story can be republished for free (details).
It was a promise Matt Perrin wasnt able to keep.
Ill never take away your independence, hed told his mother, Rosemary, then 71, who lived alone on Cape Cod, Mass., in a much-loved cottage.
That was before Rosemary started calling Perrin and her brother, confused and disoriented, when she was out driving. Her Alzheimers disease was progressing.
Worried about the potential for a dangerous accident, Perrin took away his mothers car keys, then got rid of her car. She was furious.
For family caregivers, this is a common, anxiety-provoking dilemma. Theyll promise Mom or Dad that they can stay at home through the end of their lives and never go to assisted living or a nursing home. Or theyll commit to taking care of a spouses needs and not bringing paid help into the home. Or theyll vow to pursue every possible medical intervention in a medical crisis.
Eventually, though, the unforeseen will arise after a devastating stroke or a heart attack, for instance, or a diagnosis of advanced cancer or dementia and these promises will be broken.
Mom or Dad will need more care than can be arranged at home. A husband or wife wont be able to handle mounting responsibilities and will need to bring in help. A judgment call this will only prolong suffering, theres no point in doing more will be made at the bedside of someone who is dying.
Subscribe to KHNs free Morning Briefing.
We want to give loved ones who are sick or dying everything we think they want but we cant, said Barbara Karnes, 78, an end-of-life educator and hospice nurse based in Vancouver, Wash. And then, we feel weve failed them and guilt can stay with us for the rest of our lives.
She hasnt forgotten an experience with her mother-in-law, Vi, who moved in with Karnes, her husband and two children after becoming a widow 30 years ago. At the time, Vi was in her 70s, weak and frail. Karnes was working full time and keeping the household going.
My mother-in-law and I got into a disagreement, I dont remember what it was about. But I remember her saying to me, You promised you would take care of me, and making it clear that she felt Id let her down. And I said, I know, I was wrong I cant do it all, she remembered. I still feel bad about that.
No caregiver I know sets out to deceive another person: Its just that none of us have a crystal ball or can predict what the future will hold, she said. And the best we can do isnt always as much as we thought was possible. We have to figure out a way to forgive ourselves.
Richard Narad, 64, a professor of health services administration at California State University, spent months after his wifes death in December 2011 mentally reviewing the last hours of her life before achieving a measure of peace.
His wife, April, was diagnosed with Type 1 diabetes at age 5 and was legally blind when the couple married in 1994. A year later, she had the first of a series of strokes. Eventually, April was diagnosed with congestive heart failure. In the last 18 months of her life, she was hospitalized 13 times.
April Narad had told her husband she wanted full code status in the event of an emergency in other words, do everything possible to keep me alive. But she was nervous about his willingness to honor her wishes because his own end-of-life views differed from hers.
I think certain care is futile and you need to give up earlier, he explained.
In the end, April was rushed to the hospital one night after dinner, gasping for breath. There, Narad directed medical staff to pursue full code interventions. But when a physician came out to tell him that death appeared inevitable, Narad remembers saying, Well, if thats the case, just call it.
Had he broken a promise to insist that other treatments be tried? Narad spent months wondering but eventually accepted that he acted in good faith and couldnt have saved Aprils life.
With illness, older couples can end up re-evaluating commitments theyve made. Kathy Bell, 66, of Silver Spring, Md., promised her husband, Bruce Riggs, 82, that shed stay with him through all the changes in our lives when they married in 1987. Then in August 2011, he received a diagnosis of Alzheimers.
The couple moved into a senior living facility, but as Riggs condition worsened he had to go to a memory care facility in 2014. The following year, Bell had lunch with a man whose wife lived at the same facility. He told her his therapist had recommended he start dating.
That planted the idea of possibly doing this myself at some point, Bell said, and two years ago she met a man who has become a regular companion.
Does she feel shes broken her promise to her husband, who was committed to a monogamous marriage? No, I dont, Bell said, adding that its not clear whether he knows me at this point. He doesnt talk. The way I view it: I still love him. I still go to see him. Im still taking care of him.
Promises can be explicit spoken aloud or implicit, understood without direct communication. Both kinds can inspire regret.
Debra Hallisey, 62, a caregiver consultant based in Lawrenceville, N.J., describes making an unspoken promise to her father, Don, when he was diagnosed with congestive heart failure in 2014. Their agreement, which was never voiced: Neither would tell Halliseys mother, Doris who has diabetes, mobility issues and is legally blind how sick he was.
Debra Hallisey and her parents, Don and Doris, celebrating their 60th wedding anniversary.(Courtesy of Debra Hallisey)
I knew he was shielding [Mom] from knowing the truth. When she would ask questions, he wouldnt say anything, Hallisey said. Because her mother was disabled, Hallisey accompanied her father to doctors appointments.
When Halliseys father died in February 2015, Doris was profoundly shocked and Hallisey was overcome by remorse. It was then, I said to my mother, Mommy, there are no more secrets. If something is wrong, I am going to tell you, and together were going to determine the best thing to do, she said.
In line with that promise, Hallisey has been direct with her mother, who uses a walker to get around her home in Somerset, N.J., and has round-the-clock home care. If and when Doris becomes unable to walk, shell have to move, Hallisey has said.
Ive told her, Mommy, Ill do everything to keep you in this house, but you have to use your walker and work at staying strong. A wheelchair wont work in your house, Hallisey said. I know that keeping her at home is a promise I may not be able to keep.
Matt Perrin made the decision to move his mother, Rosemary, to assisted living in 2017, after realizing he couldnt coordinate care for her escalating needs at a distance. (Rosemary lived on Cape Cod; Perrin lived in New Hampshire.) Because hed vowed to protect her independence, I felt so guilty a guilt that I had never felt before, he admitted.
Rosemary resisted the move passionately, but after a few months settled into her new home.
I felt relief then, and I still do, Perrin said. I wish I didnt make that promise to my mom, and I wish she werent living with Alzheimers. But Im thankful that shes in a place thats really good for her, all things considered.
Judith Graham: khn.navigatingaging@gmail.com,@judith_graham
View post:
The Health Care Promises We Cannot Keep - Kaiser Health News
- How good is fish for your diet? [Last Updated On: November 8th, 2009] [Originally Added On: November 8th, 2009]
- What foods have both fiber and protein? [Last Updated On: November 8th, 2009] [Originally Added On: November 8th, 2009]
- Is There Evidence That Acupuncture Works? [Last Updated On: November 8th, 2009] [Originally Added On: November 8th, 2009]
- What are some good fiber foods? [Last Updated On: November 8th, 2009] [Originally Added On: November 8th, 2009]
- Can Green Tea fight HIV infection? [Last Updated On: November 8th, 2009] [Originally Added On: November 8th, 2009]
- Quality of GNC Supplements [Last Updated On: November 8th, 2009] [Originally Added On: November 8th, 2009]
- The Gene Smart Diet [Last Updated On: November 8th, 2009] [Originally Added On: November 8th, 2009]
- Tips for eating in a vegetarian lifestyle [Last Updated On: November 8th, 2009] [Originally Added On: November 8th, 2009]
- Regarding the Starting of a new diet regimen [Last Updated On: November 8th, 2009] [Originally Added On: November 8th, 2009]
- Thoughts on Dropping Weight [Last Updated On: November 8th, 2009] [Originally Added On: November 8th, 2009]
- What do doctors think about vitamin E supplements? [Last Updated On: November 8th, 2009] [Originally Added On: November 8th, 2009]
- What herbs or supplements are commonly used for depression? [Last Updated On: November 8th, 2009] [Originally Added On: November 8th, 2009]
- Is there a safe way to lose a lot of weight? [Last Updated On: November 8th, 2009] [Originally Added On: November 8th, 2009]
- Diets that promise you will lose weight [Last Updated On: November 8th, 2009] [Originally Added On: November 8th, 2009]
- Are Fish Toxins Linked to Diabetes? [Last Updated On: November 8th, 2009] [Originally Added On: November 8th, 2009]
- Can Plastic Surgery Help Migraines? [Last Updated On: November 8th, 2009] [Originally Added On: November 8th, 2009]
- Weight Loss Surgery Eradicates Diabetes Symptoms [Last Updated On: November 8th, 2009] [Originally Added On: November 8th, 2009]
- Found: A Gene That Controls Fat Cells [Last Updated On: November 8th, 2009] [Originally Added On: November 8th, 2009]
- Sugars and Starches, what's the difference? [Last Updated On: November 8th, 2009] [Originally Added On: November 8th, 2009]
- Improving your health with a serving of nuts? [Last Updated On: November 8th, 2009] [Originally Added On: November 8th, 2009]
- Is Your Diet Causing You To Be Depressed? [Last Updated On: December 13th, 2009] [Originally Added On: December 13th, 2009]
- Placebo Effect: Magnetic Bracelet Therapy [Last Updated On: December 13th, 2009] [Originally Added On: December 13th, 2009]
- Does serotonin promote sleep? [Last Updated On: December 13th, 2009] [Originally Added On: December 13th, 2009]
- Decreased energy levels - Overeating, Sleep, Nutrition [Last Updated On: February 1st, 2010] [Originally Added On: February 1st, 2010]
- When will the body begin to cannibalize muscle tissue? [Last Updated On: February 7th, 2010] [Originally Added On: February 7th, 2010]
- Foods that are high in antioxidants [Last Updated On: February 7th, 2010] [Originally Added On: February 7th, 2010]
- Editorial: Reduce health care costs by cutting administrative overhead [Last Updated On: April 1st, 2012] [Originally Added On: April 1st, 2012]
- Health Care Winners: Centene, Onyxx [Last Updated On: April 25th, 2012] [Originally Added On: April 25th, 2012]
- Dan Morain: Nurses union puts politics ahead of health [Last Updated On: April 25th, 2012] [Originally Added On: April 25th, 2012]
- What's next if Obamacare falls? [Last Updated On: April 25th, 2012] [Originally Added On: April 25th, 2012]
- Global Managed Health Care Services Industry [Last Updated On: April 25th, 2012] [Originally Added On: April 25th, 2012]
- Immigration Fight Echoes Health-Care Case at High Court [Last Updated On: April 25th, 2012] [Originally Added On: April 25th, 2012]
- Medical Centers Lead Workplace Wellness Effort [Last Updated On: April 25th, 2012] [Originally Added On: April 25th, 2012]
- The next health care overhaul? Look to employers [Last Updated On: April 25th, 2012] [Originally Added On: April 25th, 2012]
- Capital BlueCross Hosts Community Health Care Forums Focused on Managing Costs While Maintaining Quality [Last Updated On: April 25th, 2012] [Originally Added On: April 25th, 2012]
- County committee to look at area health care [Last Updated On: April 25th, 2012] [Originally Added On: April 25th, 2012]
- President Obama Calls on Students to Tell Congress: #DontDoubleMyRate - Video [Last Updated On: April 25th, 2012] [Originally Added On: April 25th, 2012]
- Sen. Coburn: Competition in Health Care to Allocate Resources - Video [Last Updated On: April 25th, 2012] [Originally Added On: April 25th, 2012]
- Jesse Kelly health care - Video [Last Updated On: April 25th, 2012] [Originally Added On: April 25th, 2012]
- PHC Vision Statement (short version) - Video [Last Updated On: April 30th, 2012] [Originally Added On: April 30th, 2012]
- The Bioeconomy Blueprint Panel - Video [Last Updated On: April 30th, 2012] [Originally Added On: April 30th, 2012]
- Providence Health Care's Vision Statement - Video [Last Updated On: April 30th, 2012] [Originally Added On: April 30th, 2012]
- Department of Health and Human Services: Minority Health Blogger Townhall - Video [Last Updated On: April 30th, 2012] [Originally Added On: April 30th, 2012]
- Health care worker accused of stealing identities of brain i - Video [Last Updated On: April 30th, 2012] [Originally Added On: April 30th, 2012]
- Health Care Reform, Part 1 of 3 | KYVE Insiders Roundtable - Video [Last Updated On: April 30th, 2012] [Originally Added On: April 30th, 2012]
- Health Care Reform: The ACA and Beyond - Video [Last Updated On: April 30th, 2012] [Originally Added On: April 30th, 2012]
- Is Broccoli Like Health Insurance? - Video [Last Updated On: April 30th, 2012] [Originally Added On: April 30th, 2012]
- Did Obama make a mistake on health care? - Video [Last Updated On: April 30th, 2012] [Originally Added On: April 30th, 2012]
- How Democrats Lie About Health Care - Video [Last Updated On: April 30th, 2012] [Originally Added On: April 30th, 2012]
- Toobin on Health Care: This was a "judicial hissy-fit" - Video [Last Updated On: April 30th, 2012] [Originally Added On: April 30th, 2012]
- President Obama says health care law will stand - Video [Last Updated On: April 30th, 2012] [Originally Added On: April 30th, 2012]
- Obama Defends Health Care Law From 'Judicial Activism' - Video [Last Updated On: April 30th, 2012] [Originally Added On: April 30th, 2012]
- Obama Healthcare Individual Mandate - Video [Last Updated On: April 30th, 2012] [Originally Added On: April 30th, 2012]
- President Obama attacks Supreme Court on health care - Video [Last Updated On: April 30th, 2012] [Originally Added On: April 30th, 2012]
- Raw Audio: High Court Dissects Health Care Act - Video [Last Updated On: April 30th, 2012] [Originally Added On: April 30th, 2012]
- Health care on trial - Video [Last Updated On: April 30th, 2012] [Originally Added On: April 30th, 2012]
- Final Day of Health Care Law Arguments Before Supreme Court - Video [Last Updated On: April 30th, 2012] [Originally Added On: April 30th, 2012]
- Feds to put up $1.9B for Oregon health overhaul [Last Updated On: May 4th, 2012] [Originally Added On: May 4th, 2012]
- Scuttling health care act will freeze Medicare, White House warns [Last Updated On: May 4th, 2012] [Originally Added On: May 4th, 2012]
- U.S. Health Care Spending High, But Quality Lags: Report [Last Updated On: May 4th, 2012] [Originally Added On: May 4th, 2012]
- Yes, the Health-Care Mandate Is About Liberty [Last Updated On: May 4th, 2012] [Originally Added On: May 4th, 2012]
- Health center gets $1M federal grant [Last Updated On: May 4th, 2012] [Originally Added On: May 4th, 2012]
- Health-care reform panel considers exchange options for Va. [Last Updated On: May 4th, 2012] [Originally Added On: May 4th, 2012]
- Hmong health care gap focus of Healthy House dinner [Last Updated On: May 4th, 2012] [Originally Added On: May 4th, 2012]
- Walsh-led health bill to be unveiled [Last Updated On: May 4th, 2012] [Originally Added On: May 4th, 2012]
- Ontario health system confusing for ailing seniors, study finds [Last Updated On: May 4th, 2012] [Originally Added On: May 4th, 2012]
- 'Health Care Deserts' More Common in Black Neighborhoods [Last Updated On: May 5th, 2012] [Originally Added On: May 5th, 2012]
- With federal money, Oregon kicks health care reform into high gear [Last Updated On: May 5th, 2012] [Originally Added On: May 5th, 2012]
- Nurse practitioners tackling more 'doctor' tasks [Last Updated On: May 5th, 2012] [Originally Added On: May 5th, 2012]
- Konza Prairie Health Center Receives $4.5 Million Grant [Last Updated On: May 5th, 2012] [Originally Added On: May 5th, 2012]
- Alberta wages hurting Sask. health care [Last Updated On: May 5th, 2012] [Originally Added On: May 5th, 2012]
- House releases plan to cut growth of Massachusetts health spending in half [Last Updated On: May 5th, 2012] [Originally Added On: May 5th, 2012]
- Mass. House Will Unveil Bill Seeking To Rein In Health Costs [Last Updated On: May 5th, 2012] [Originally Added On: May 5th, 2012]
- President Obama Welcomes the Kentucky Wildcats - Video [Last Updated On: May 5th, 2012] [Originally Added On: May 5th, 2012]
- President Obama Speaks on College Affordability - Video [Last Updated On: May 5th, 2012] [Originally Added On: May 5th, 2012]
- My First Job: Gene Sperling - Video [Last Updated On: May 5th, 2012] [Originally Added On: May 5th, 2012]
- Health-care costs worry near-retirees [Last Updated On: May 7th, 2012] [Originally Added On: May 7th, 2012]
- Massachusetts Institutes Health-Care Price Controls. Is America Next? [Last Updated On: May 7th, 2012] [Originally Added On: May 7th, 2012]
- Massachusetts Moves Toward Health-Care Price Controls. Is America Next? [Last Updated On: May 7th, 2012] [Originally Added On: May 7th, 2012]
- GOP plan boosts Pentagon, cuts social programs [Last Updated On: May 7th, 2012] [Originally Added On: May 7th, 2012]